Personal relationships and chronic illness

Being new to all of this Lupus stuff has been mind blowing for me. A little history, I was a gymnast and professional acrobat, I've had numerous injuries and broken bones and I just thought the pain I live with every day was part of "Me" I never thought much more about it. I have a very active lifestyle and a super high pain tollerance and I just plug away every day and don't let it get me down too much. So, my diagnosis just gave my Normal a new name. Part of me feels encouraged because now I can take it head on and try and help myself whereas before I thought it was as good as I can get. Yet, part of me feels depressed because now I know THIS IS IT! It's never going to get better. I have to accept that I AM MESSED UP! 6 of one half dozen of another.

I'm trying to find the things that will help me most. Diet, medication, supplements, sleep patterns, shoes, you name it.....I'm willing to try it!

Problem is I have a boyfriend who at some times is the best guy ever and others is just downright mean. The kicker was when my friend baked me a gorgeous gluten free cake the other day. I was so excited that I snapped a picture of it and sent it to him.

His response was, "Screw that!"

I was so confused, I didn't know what he was talking about so I text back, "Screw what?" I thought maybe he couldn't see the cake in the picture so I said, "It's a chocolate bundt cake with caramel icing. Gluten free so I can eat it!"

He said, "Every time you say 'gluten free', I cringe"

I was so hurt, I burst into tears and said, "Thanks. That's encouraging."

He then told me, "You can eat it all you want.....I'm just not interested"

I said, "Thanks"

Of course, it's ended up a huge fight and his POV is that we're fighting about a POV is we're fighting about his attitude!

He says I'm dramatic, a drama queen and I just want sympathy from him. He said, "You need to watch Real Sports with Bryant Gumble and see how people who face REAL adverstiy react!"

I say that I need someone empathetic and supportive. I have NEVER asked him to follow my dietary needs, they are mine and mine alone! I was simply excited that someone cared enough to take the time to bake me that cake.

We were supposed to go out of town this weekend and I told him he needed to go see his family without me and decide weather or not he can accept all of this. When in reality, I need the time to decide if I can accept his callous attitude towards me.

I just was diagnosed and am trying to land on my feet and a little caring goes a long way! We've only been together a year and as long as things are kept onthe surface, he's great but now I see the first moment of trial and this is what he serves up to me.

Is this sort of behavior normal? As first, when he refused to look at my bloodwork and wouldn't talk to me about anything I thought that maybe he was just scared and I gave him the benefit of the doubt but at this point.....I just don't need it! How have other people's partners/spouses reacted to this? Is this par for the course or am I seeing it correctly.....that it's just mean spirited?

Thank you!


I am so sorry that you are having to deal with this on top of dealing with lupus! I am not sure what his deal is! But you need to figure it out! Stress and the sun are your enemy and you need to eliminate as much stress as you can now from your life.

My family had a hard time dealing with the symptoms. One day I was fine and the next day I could not get out of bed. Plans had to be canceled or they had to go without me! I have been married for 35 years! I have been dealing with lupus symptoms for 25 years and was not dianogised until 2007. So like you I did not know what the symptoms where coming from and I too just tried to push through. I figured the same thing, that this was my life and I had to move forward!

There is a lot of disappointment that comes with this diease and sometimes love ones do not understand because you look fine but inside you are hurting with pain so bad you cant move! Once I was diagonsised my family became more understanding. Educating my family was the key! Now when I am having a bad day or a bad week they just go with it and help me out. I now have a great support system but it took them a while to understand!

He may be afraid of what is going on or he may not understand! You may want to find a support group in your area and see if he will go with you! I would suggest that you have a long set down talk with him and give him the benefit of the doubt! Lupus will change your life! I have lost friends because of this disease. But I have come out the better person for it!

Remember lupus patients can go into remission!

Best of luck! I am here if you need a shoulder!



Wow. I am so sorry that you are dealing with this. First of all, you are not "messed up" - you have a rare disease and it is lupus. You are being proactive with your diet and your lifestyle, Good for you! I'm looking at the gluten free, and just haven't started it, so keep up the good work. You have to take care of yourself and do what works for you. What a wonderful friend you have that took the time to make a gluten-free cake for you!!!!!! That is so cool.

I'm trying not to be judgmental about your boyfriend, but he said you need to watch sports to see how people "face real advertisity". Does he understand lupus? Next question: does he WANT to understand what you are facing? I agree with Deenie, you need to eliminate as much stress as possible from your life. Search your heart, only you know what's best for you. I am just newly diagnosed myself, and when my rheumie gave me the pamphlet on lupus I went home, read it and cried. My husband took it and read it, put his arm around me and said "I'll take care of you." I cried more. It's an adjustment for the whole family, and I'm the one taking care of everyone else, its very tough to step aside and let my family take care of me.

You deserve someone to care about you, and let you know that your fears, feelings, aches and pains are real. If you don't have that at home, you have it here with us : )

Hugs to you


Your boyfriend is not the man for you. Can you imagine spending the rest of your life with him being angry with you over every time you mention some part of your lupus? It would be hell. There ARE good, kind men out there who don't act like that. Also, this disease is well known for "remissions", so don't give up hope that it won't get better, because it can get better, and you will have good weeks or months or years, and even good days and bad days. Be grateful for the good days.

My hubby was polite, but his family were outright mean about my illness. They finally convinced him to leave, and even helped get the mistress. But I have seen so so many ladies on here whose husbands are loving and supportive and kind. We just have to find better companions.

Why are you going gluten free? Do you have celiac disease?

Best wishes, Sheila

I personally, think he is scared and uneducated. Most men can't stand to see their lady down, hurt or crying. Their natural response is basicly, " man up". That's what they would tell their buddies, that's what the buddies would tell them. Men don't realize most woman have a very high pain tolerance and once we say were in pain then we are REALLY in pain. Where not to offend any men, they whine like babies over everything.

I am dealt with the pain and moved on for at least 16 years, and finally diagnosis this Jan. All 16 years, my hubby was pretty much like your boyfriend, just suck it up and keep going. Which is how I have always thought myself, til I couldn't go anymore. When I was diagnosis, I asked my hubby and kids ( all under 16) to read about Lupus ( and Crohn's dx in 2010). He didn't read it, or at least when I was around. He said he knew I was in pain and not feeling well, yet, he has expected me to keep up with him and the kids but I know it's because he can't stand the idea that I am sick. It's finally started to sink in to him and it's mentally hurting him bad.

Last week he ended up in the ER with stomach pain. The ER doctor told him my crohn's pain was 10 times worse. I said now imagine that in ALL your joints. The next day, I started chemo ( for lupus), he sat in the bed with me for two days. He said it was because his stomach hurt, I know it was because he couldn't stand to see me lay in bed and sleep so long. He had to be next to me to make sure I was ok.

My point in telling you this, he really had to understand the conditions, how I feel, that it's real, that it's serious and it took the words " chemo therapy" and his pain for him to see I am a fighter but the diseases are getting the best of me right now.

I hope hearing my story, helps you. I think it's awesome you asked for help here and are trying to understand how he feels.

Hope you feel better soon.

Bumps, you deserve to be happy and not shamed by having lupus. My husband, soon to be X still thought it was a contest on who hurt the most. He refused to understand it and didn't want too. I always thought if he really loves me he would understand. That never happened he still thinks it is all in my head, fibromyalgia, lupus, in his eyes is pretend. It is rare that people with this thought pattern ever change. I wish you the best, and yes do what is best for you, you and you alone are the one who knows this!

Hey, I used to be an aerialist! Side-gig, not a full career, but many of my friends are on the Euro and new-American Euro-style dinner circus-theater circuit :slight_smile: I used to wonder why I always had more pain, fatigue and chronic “injuries” than women twice my age in my troupe and community. I chalked it up to being a full-time neuroscience major, spanish minor and gigging aerialist teaching classes to boot!
But again, others around me were keeping up a schedule that packed plus motherhood in some cases… And my motivation/energy often passed up my musculoskeletal tolerance till about 2009, when debilitating fatigue rolled in more frequently. (Currently, its been ruling at least half of my days in the past 6 months, but I’m beating it back little by little bow that I know how to work with my reality rather than fighting and running from it, plus plaquenil building in my system the last two months, and accepting to take anti-inflammatories rather than “tough it out.”) It’s all finally making sense to me now, and to me it’s more relief to know, though sometimes scary to think what can come with it… But I am one to see it as, “this is my reality, and it would still be happening without knowing what it is, and knowing about it gives me power to do something about it!”

I’m only 25 and currently single, so I can’t claim to be the love expert… Yet I have failed and observed enough to know a lot, including watching and admiring friends in extremely happy relationships! Which I have never had, and often blamed on my own complexity and demandingness. Newly diagnosed as well, but been one with “issues” a long time. It had DEFINITELY affected all of my relationships back to the simplest ones in high school. One thing I was extremely glad to have recognized already was how some men (and boys, back in the day!) I’m with have a natural and easy way of calming me down and making me feel understood and supported, just by their manner, while others really send me through the roof making every problem worse in spite of good intentions! Those ones who “fit” me in terms of harmony didn’t in other ways, or had other priorities and moved on. Just as well, I’m honestly still in “learning” phase about relationships and just starting to have an eye to “settling down” in the next few years if I’m fortunate enough to find something’s that works for me :slight_smile:

Still, a CRUCIAL thing I’ve found is that I have much more peace, success and satisfaction taking care of myself, both my health and my emotions, than being with someone destructive. And I’ve really felt what you describe of the “sometimes” destructive relationship, of which I’ve had several including one that lasted almost four years and got worse over time! I think if someone treats you badly any amount of the time, knowingly, without it being a mistake that is apologized for and FIXED immediately, is far worse than not-worth-your-time, but actually displaying warning signs of future more serious pain or even abuse. At best, and giving him the biggest benefit of the doubt (which I tend to always do as the loving-forgiving type… Callousness in my words is just reflecting the balance in view I’ve had to build for myself…), you could see it this way: he just can’t cope with your truly higher levels of needs and intensity (which probably also contribute to your beauty and power as a person… Find someone who loves you more for it rather than resenting it!) You can see my bias towards you deserving the love and support you need, even if it’s just through friends and family and yourself during this hard time, but I also am oriented toward being pragmatic about relationships “working” and “not-working”. If he he is drowning in your depth, is that good for him either? No… Maybe he has a relationship disability and needs someone easier to digest, and you have a medical condition and need someone who can hack it. A quote from Marilyn Monroe, of all people, says “If you can’t handle me at my worst, you don’t deserve me at my best…” That was posted by a friend struggling to get out of an extremely manipulative and miserable relationship in the midst of her MS diagnosis last fall at barely over 24 (sad it took such a huge blow to her own health to get her in gear to take back her dignity and emotional health, but amazing how she harnessed strength to take it all on!) Your reality IS your reality, and you are entitled to living it and being loved for it!!! It’s also true that you are responsible to manage it, and in general directing the course of your life… But I see you having no trouble with this just by how you describe yourself… Though Marilyn’s statement could be used as an excuse for selfish or poor behavior and entitlement, your concerns for easing your burdens on others clearly show YOU have what it takes to negotiate a mutually supportive relationship; his cake-tantrums that blatantly ignore how his unfounded rage hurts you shows he does NOT! I don’t know his age, but if he’s older than 22, then his actions are no longer even developmentally appropriate! One thing that hit me hard thinking back on excusing guys for needing to “grow up,” and finding hit-or-miss success dating older, was realizing how thoughful and patient the boyfriend I had for the first half of high school was (at age 15! ), despite my own struggles and major family drama at the time, leading to seeking a ton of support from him and his family… He’s engaged now and gonna make that girl so happy :slight_smile: Comparing that to guys ten and 15 years older than he was then who couldn’t internalize even one way they hurt me or let me down… No idea what I was thinking staying with them beyond those first few battles! One time it was years of pain, now I limit it to months, or in the past year and a half, just weeks! Some people are sensitive and caring, others aren’t. This is not a gender/age thing, though thise can influence experiences and communication styles to some extent… Because we are all unique and unpredictable, someone caring will occasionally get it wrong, then recognize it or hear you when you bring it up, and apologize and try to learn without blaming you! And maybe ask for your cooperation or compromise, but be respectful and clear in doing so! I’d say with a year or so invested with him he’s not learning fast enough how to be with you, and aren’t more years together just going to deepen those grooves of resentment, pain and dependence?

My stepmom warned me a few years ago that relationships get harder, not easier, over time, even as they deepen and get better! Make sure yours is golden before you get too far in… One of my friends, a major role model 5 years older than me, is in beautiful, strong, inspiring relationship, the kind whose wedding made a whole crowd of people absolutely high on the sheer joy… She is actually trapeze partners with her husband and thus is with him 24/7, often away from all other friends for contracts, under intense pressures and in a constant mode of critical improvement and self-management of their act (i.e. some of the toughest relationship circumstances imaginable…) Her comment on finding each other 8 years ago? “Everything just felt so easy and right, and I didn’t feel like I was such a problem anymore!” They are luckier and much closer than most, but I have had my own fair share of experiences that point to some people naturally fitting while others make everything an uphill battle for each other. And some people are just jerks, even though we want to believe in them. So, I would say tell him the ways his closed-minded hyperreactions are hurting you more than helping, and that he needs to think about how those behaviors would impact anyone, not just someone with high challenges and needs! Or, if thats more risk to your well-being, walk away more cautiously and let him figure it out while he’s alone. He obviously isn’t too afraid of that to be treating you that way… Or is used to getting away with it and has a hard lesson coming! But I don’t take any of this lightly, and I do know these things are harder and far more complex from the inside, that there is always the concern about baby-with-bathwater and a fear of the unknown… But in all honesty, even if you do have beautiful things between you, it seems to be souring by the ways you overwhelm him and he undermines you. I say get good friends around you, keep in mind what you could find instead, know you can take on your challenges independently, and let this one go! Even just doing so may remind you of your strength to take on your lupus, and your confidence and competence will be wildly attractive to many suitors… Most of all the ones who want to see you thrive rather than cower :slight_smile:

That last part I can say has been working for me… In the last year and a half of raising my standards or really throwing out the search in favor of self-development, I have had more offers and advances than ever, from a more “eligible” crowd of bachelors (plus of course the steady stream of desperate ones…) I’ve stayed open minded to try it out, but if it’s getting difficult early on I instantly prioritize my need to keep on track and move on. Right now I have a good balance for the past 2.5 months with a guy I started seeing, slowly and cautiously, just a few weeks before my diagnosis (and definitely in the heat of struggling with symptoms!) We have kept things moving slow; I’m busy with my lupus and redirecting of my whole life plans, he’s on a big push with his acting career in addition to his existing music career (he has lead roles in two San a Francisco plays simultaneously this fall, continues driving to LA many weekends for film&TV auditions, and is releasing a self-produced EP in the next month! While holding down his steady half-time job!) Despite how swamped he is, and honest in stating his priority on his goals rather than getting caught up in a relationship, he is remarkably attentive and understanding when we talk, and the time we spend together about once a week (about to decrease due to his rehearsals starting up) is extremely positive, worthwhile, comforting, and teaching me to trust more again. It’s great for me right now, low pressure and high reward, and partly so because we are communicating what we can each handle (and fortunately are matching in our level of commitment… Minimal, but eager.) I might have to say goodbye at any moment if he relocates for a movie, and maybe our lives will never really line up well for what we each need into the future, but a more limited interaction with someone who makes me feel so good is just what I need right now. No sense in suffocating him trying to demand more, especially when it’s so important for me to manage my own growth in my emerging reality. Also no sense in staying any longer than I can stay comfortable with a low-density interaction, but I’ll run with a good thing for now and change course as needed. I told him my guess was about a year till I’m going to be ready for something more serious… And if he’s there with me he’s top pick. His skills in communicating and talents in working with me are worth a bit of patience to see if something bigger can grow later… And at least I’m getting a taste and knowing what kind of care and manner I like in case I need to look for it elsewhere to settle down. It’s great to have a reminder that people are good and kind, and even better when they understand you, and you can give and receive freely what you each have to give. If it stops being that, I’ll be glad to take the lesson for the road!

Best of luck and much love to you also. I know it’s such a hard road, both the lupus and the troubled relationship…especially when they intersect… Hang in there! Use this period to really feel and develop what’s right for you… It’s the major gift we receive along with what’s taken from us!

To Ann,

Thanks for sharing more of your history; it really speaks to why all of your posts are so powerful and inspiring! Your wisdom and intuition are clearly as strong as your willpower, and it’s so important for the younger women like me to see…

Thanks for being a leader in our community!


I have a reasonably new Dx of Cuteanous Lupus & have been in Hospital in a dark room with wet towels over me & daily 75mg Prednisilone for 10 days. Now at home 5 days on 50mg & trying for as much dark as possible getting (shuffling) about a bit more each day. Skin went NUTS 100% purple lumps & sores & 'sunburn'. Specialist advised I was profoundly ill. Thought to have partially been a Plaquenil drug reaction in addition to my very first Lupus 'flare'. First one's gotta be the worst ehh?

Hubby was good with all pratical jobs;- Hospital visit's & little errends I needed done. Doing my laundry, getting my car serviced whilst I couldn't drive, shopping & cooking for himself & our (adult) son etc etc.

But he kinda cracked up on my first day home. Many men just can't cope with mosaic, irrational, ill defined, NOT HIGHLY visible (i.e. no road map & neon signs) stuff. This may well be all your man is capable of. If so, he may not be much of a partner for a woman with such a jig saw puzzle of an illness as Lupus.

I'll try to adapt MYself a bit more & call on Pals for some types of help, (emotional stuff maybe) Ive been married 27yrs at this point.

Would I advise YOU to start out adapting yourself to your fellow at this point? Doubt it.

Is he the greatest love of your imagination & hopes? If No maybe you can chart the next few years better on your own or NOT with a live in relationship. Maybe he can man up, maybe not. You can't 'carry' him & his shortcomings as you will need all of your rescources to carry yourself through each day. Great days, fair days, crap days..........

You sound like a tough, determined, savvy young woman. I wish a lovely future for you & whomever you share your life with. Forgive me if I have been too fwd &/or presumptious, Kindest regards & well wishes Kaz x

Thanks Kaz for your helpful insights in the fuzzy line between able (but struggling) and willing and unable and/or unwilling!

I think a lot of us are on the same page that Bumps brought up at first: is it worth being patient with his poor behavior? And we all seem to agree only she can tell for herself, and has some GREAT perspective on taking care of herself already… I just wanted to say again how glad I am that living with lupus helps us set our priorities and attend to our needs shamelessly and with strength… This community certainly helps a ton!

For me, it gets scary thinking lupus will have an impact on whether someone would “take me on” as a major challenge in their life… But that’s silly, because nobody knows when they’ll have an unlucky draw, and it helps to know in advance if the sickness & health vow is really taken seriously :slight_smile: Glad to hear it has been for Kaz and others, and glad to hear Ann and others have been strong and forged a great life when it came up short. For everyone in between, I’m so glad we’re here for each other with advice and understanding!

So much love and warmth in my heart right now :slight_smile:

Absolutely outstanding post Ann A. I have read it twice! I'm sure it will be of assistance to 'Bumps' & many others. Thankyou from Kaz xo

Ann A. said:

Dear Bumps,

My marriage ended shortly after I was diagnosed with lupus. My husband of six years coudl not understand how I could be feeling fine during one part of the day and be sick during the next. Shortly after we separated he was diagnosed with chronic bursitis, psoriasis, and eczema. He was ready to come back home. But I decided that he was a child - a child who outweighed me by almost 100 pounds. I decided that I would focus on taking care of the two young children and myself rather than on taking care of him. It was clear that he was never going to take care of anyone, not even himself.

Over the years he developed a number of other chronic degenerative conditions. When he died, divorced from his second wife, his lymphedema was so bad that he could not wear anything resembling a shoe. I felt very sorry for him. But I was glad that I had let him go. My daughter said the same thing after seeing her father with his second wife. I mean for years she was angry with me for not working harder to save the marriage. Then when she saw first hand how he treated a perfectly healthy woman and their two children she thanked me for having the courage to raise her and her brother by myself. I agree with Sheila W. This man does not sound like the man that you need in your life. Instead of comformting you, he is adding additional stress.

You athletic mindset will help you greatly in dealing with lupus. I actually find that I get some of my best moral support from the people in my social network who are thoughtful and empathetic and who are also athletes and/or soldiers. They might not understand chronic illness, but they understand "playing while injured." We live while injured.

The athletes and/or soldiers understand the concept of pushing to find the limits of your physical capacity. The thoughtful and empathetic ones can understand that I reach my limits long before they reach theirs and they give me credit for trying. The soldiers and athletes also spend time being injured and then going through rehab. The thoughtful and empathetic ones understand that for me rehab is a lifelong activity. They help me celebrate my milestones as I help them celebrate theirs.

One of my friends, for example, lives in Yonkers and often takes public transportation to fly on the trapeze in Manhattan and then to meet with her consulting clients all over the metro area. There is no telling how many miles she walks in one day. But when I finally made that mile on the treadmill (a goal set by my neurosurgeon after a back surgery) she was as happy for me as I was for her when she was finally satisfied with her "pullover pump shoot." I go to water aerobics; she goes to ballet and Pilates. I swim. She flies on the trapeze, works on the trampoline and the low bar. I take a “gentle yoga” class. She goes to Bikram and takes the 90 day challenge. I take “Tai Chi” for the elderly; she goes to a boxing class. I work with my resistance bands in my family room; she signs up for TRX.

Each of us does the best that we can to play the cards that we have been dealt. Each of us has a good life. Neither of us has any time or energy left over for people who are not supportive of our efforts. Hang out with the people who made you a gluten free cake. In that group you will find someone who can support you in living the best life that you can. Your life is not over your plans have just been modified.

Hi Bumps, My name is Beverly L. ,yes it's hard for some people to deal with not knowing how to help the one(s) they LOVE !!! They feel like they should be able to fix what they can't . And yes i went through this with my family and close friends at first , but as time went by they came to understand that it was something that was going to happen and that i really needed for them to understand it was going to be okay and that i needed their support and their LOVE for me to over ride the pain of feeling helpless for me . Giving me the Love and time, when they could would comfort me just as much , and believe me it wasn't easy at first -smile . Learnig this helped me to respect them more for just trying , even though it seem hard for them . Giving them information and explaining what the doctors would tell me after my visits also helped me and them to have open converstions of this LUPUS stuff better . And now they when things are not going well for me , and there is no pressure or should i say" STRESS from me or them ", it's pretty cool now that everyone are somewhat understanding that , "am going to do all that i can to LIVE for as LONG as i can and to LOVE them like i've always have - even b4 the LUPUS came around !!!!! smile So to sum this up," just talk with them and let them (him) know that you are still the same person as b4 "... Hope this helps and comfort you in some way !!!! And also remember not to STRESS it will be alright with time .... talk with you later Beverly L.

Hey Bumps.

Dump this loser. I was married to one of these self centered dudes. He will stick his head in the sand and keep following his agenda--not you or your needs. I would be willing to bet he says how much he cares but demonstrates he cares mostly about himself and what he can get out of the relationship. When it comes to the hard stuff, he will put his head in the sand. Trust me marriage and children make it worse. My ex and I were married for 18 yrs. He has been told about my condition. He told my son's Dr. we don't have any joint problems in our family. I have been going to a rheumatologist for 1 1/2 years. I lost a cousin to lupus in July. He also didn't know my son's allergies--he's goin to be 17. However, he could tell you about every sports injury and illness he's ever had. He also told the Dr. that there were no heart conditions in the family--his own mother died on his toilet in his house due to heart condition. He had to ID the body. But no heart condition. This is not ignorance. This is asshole--a whole different type of mental condition. You be the judge. But remember just because you have a medical condition doesn't mean you are not an important valuable woman who could catch someone who is 10x the man this jerk is. You decide but I wasted too much time on this dude and he still aggravates me with his egocentric crap. I hate to go to soccer games and listen to his ignorance. He hurts alot of people by the way he puts himself 1st including his son. Sorry, tender topic. Welcome to the support group! I am a scrapper and a patient advocate! I am a survivor. You are too. Take care, darlin. Karla

So sorry you are going through this… But love your attitude!

I would start off by rounding up some brochures for him to read so maybe he will get that you aren’t being a “drama queen”. Then a long talk is in order. Sometimes guys just don’t know how to deal with stuff. If this is the case and you can “open” his eyes, it might work. If he’s still in that “young and stupid” phase… It may not be worth the effort. Ultimately, the relationships that work long term are the ones where each person puts the others needs and happiness above their own. Any “selfish” behavior is kind of a “tell” of where that relationship is going.

How hard would it have been for him to say “enjoy your cake” or “save me a piece”. That would have taken less effort. So to me, it seems like he was spoiling for a fight. So my question would then be “why?”. If you can figure that out, you’ll know what you should do. Don’t expend massive amounts of energy that you don’t have trying to make a relationship work. It shouldn’t be that hard.

Hubby and I have been together since high school (I was 16, he was 17). I’m not implying that relationships don’t take work… they do! But this early on, and in the circumstances of a newly diagnosed illness, this should be one of the “easy” times for the relationship, where you are both drawn closer together trying to figure things out. (not easy from an emotional aspect, just easy as you should both be in the same place emotionally). I hope that makes sense!

Hi Bumps,

I think you have been given some good insight here. Now I'll tell you what I think...

Comparing a serious, chronic disease, such as Lupus with sports injuries and their ability to still play is sheer self absorbed ignorance and a determination to remain that way. By now he should have worn out a computer doing research on Lupus, to do all he can for you, instead of the time he uses to keep up with sports and their injuries. And so it seems that anything that he chooses not to deal with, that interferes with his limited interests and self serving agenda will be thrown onto you, as being your fault. This should not be okay with you, you do not want this to go into a marriage with children, where you are all treated this way.

It sounds as though you have chosen your friends well, keep that in mind that you want a boyfriend to be a friend, we all deserve this much. You cannot choose your family, but you do get to choose who you give your time and love to as far as a mate. No one is perfect, but my dear, you can do much better! Don't set yourself up, my friend!

We are all here for you, and it sounds like your friends and Doctors are too, you have a lot of good going for you! You are a lovely young woman with so much going for you, you should be cherished!

Wishing you health and happiness,


Hi Bumps,

I'm sorry to hear you going through, but stress is not our friend!!! My husband didn't understand at first either, but after I educated him and he took the time to find out for himself changed a lot. Now my whole family is very supportative of me, sometimes I think my husband forget because he use to us having a very active life together especially now it's football season, but he have excepted the fact that I may not be going to a lot of games this year with him. We were very active being outside and this summer haven't been so great of course you know the sun is not a fan of ours.....But above all at the end of the day you have to do what's best for you. I pray a lot and depend totally on the Lord to help me make decisions. I make time for quite time with the Lord and just talk to him about my problems and I've learn to wait until a spontaeous thought come to my mind because when you have thoughs thoughts know that they are from God........God is of all good things, so when those evil thoughts come to mind just disregard those thoughts and think of happy thoughts only from our God.

Only you know your boyfriend and if you really think in your mind that he doesn't want to really get to know about your disease and it's bothering you then you need to do the next best thing for you to continue on your journey and have a happy life. Life don't end here just because of your sickness; I thought the same way because we are so active in sports with 6 boys, but you can still have just as much fun. Always tell yourself that I'm not sick I can do all things through Christ who strengthens me and it will come to pass.............Love you stay strong!!!! Carol Burley

hi bumps

just remember if your boyfriend doesn't want to deal with you when your at you worst, he doesn't deserve you at your best! my advise stop wasting your time with someone who is not worthy !

You know, I am on Lupus, Fibromyalgia, and Psoriatic arthritis, I read the stories, and write them, and underlying with almost, all is injury. There are so many 'blown discs', bulging discs, herniated discs, twisted discs, degenerative disc, facet disease, spinal stenosis, scoliosis, spondylitis, and the list goes on! I don't think many have 'good backs'!

I like that JC, "It's about progress, not perfection"! Perfect!

OBTW, wouldn't it be nice to have the unlimited staff and resources available to professional athletes? Every treatment known to man is available to them, and these are the ones who graduated from med school at the TOP of the class that they have access to. Kind of like the Beauticians, make-up artists, dentists, plastic surgeons, designers, wardrobe available to the rich and famous, no wonder they are stunning, we would be too! Unfortunately we live in the real world, the scratch and scrape and eke by one!

Hi Susan,

Good point on this issues you stated

You know, I am on Lupus, Fibromyalgia, and Psoriatic arthritis, I read the stories, and write them, and underlying with almost, all is injury. There are so many 'blown discs', bulging discs, herniated discs, twisted discs, degenerative disc, facet disease, spinal stenosis, scoliosis, spondylitis, and the list goes on! I don't think many have 'good backs'!

"With these issues alone you don't need Lupus for any extra pain"

I guess if we had as much money as they do, we COULD have more resources. it seems to be all about money. Also the fact that there are not as many resouces available for lupus as for sports injuries, which is a clear-cut science. Each of us with lupus is so different and there are not many treatment alternatives. I think if there were lots of people with lupus in the entertainment and sports worlds, you can bet there would be more research just to keep these folks able to make money for the movie studios and sports teams.

SK said:

OBTW, wouldn't it be nice to have the unlimited staff and resources available to professional athletes? Every treatment known to man is available to them, and these are the ones who graduated from med school at the TOP of the class that they have access to. Kind of like the Beauticians, make-up artists, dentists, plastic surgeons, designers, wardrobe available to the rich and famous, no wonder they are stunning, we would be too! Unfortunately we live in the real world, the scratch and scrape and eke by one!