Chronic Disease & Friendships

Chronic Disease & Friendships

Chronic disease can often push the limits of friendship and if you’re reading this as a person living with Multiple Sclerosis, you may have experienced this in one form or another.  There are the friends who just don’t know what to say and they silently leave your friendship behind after a few obligatory ‘what can I do to help?’ offerings.

Then there are the friends who try their best as they know it, but for the present they often stumble over the all-too often heard line ‘you look so good, you must not be feeling so bad.”  It is hard for many people to understand the ‘look so good’ disease status and why we just can’t push on for that extra event or activity.

We would like to think that those of us who have MS are the only ones subject to the shifting winds of friendship, but this human shortcoming is not exclusive to those of us with MS.  My daughter has recently suffered in silent pain in her own form of ‘but you look so good,’ thanks to a severely herniated disk.  She has continued to shower, dress nicely and comb her hair to be presentable, all the while feeling truly awful,  waiting for the pain meds to kick in.

She has struggled with her own friends’ lack of understanding why she would rather stay in for a quiet evening than go out for music and dancing.  They tell her how good she looks and prod her to ignore her own instincts to head out for a social event that will in the long run cost her in pain and energy.

Even more difficult than the physical pain of her condition is the emotional toll that she has experienced from the disappearing friends.  These are the same people who have sworn allegiance through thick or thin, but suddenly don’t know what to say or can’t be bothered with altering their routine to include her with her limitations. We all know asking for help is humbling and something few of us do easily and I know how difficult it was for her to post on Facebook that she was counting on her friends to keep her spirits up as she is confined and tries to heal.

We talked recently about the similarities of her condition and mine, particularly how she now understands from her own health experiences that I am not simply slacking on being active and that the simple acts of daily life can exhaust both her and me. We both ‘look so good.’  I haven’t broached the disappearing friends’ similarities with her, and have instead just listened to her express the disappointments that continue to come her way.

She has surgery scheduled to correct the back problem and all our fingers and toes are crossed, hoping this will be successful.  In a few months she should be back into her routine, but the lessons she has learned about chronic illness and its effect on relationships will probably stick with her forever. I’m sure the next time a friend issues a request for companionship in tough times, she will respond – but she has always been that way.

Unfortunately, whether it is chronic disease like MS or curable ones that take serious medical intervention, health problems can create these silent divides.  I hope you have not found yourself in that position and have friendships that endure the challenges of changing health.

Wishing you well,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (15)
  • Musicang
    2 years ago

    I know this is an older article, but reading through both it (again) and the comments I had not read before, I felt the need to post. I have been through a lot since my dx in 2005. I tried to salvage a marriage to a narcissistic jerk that found a lot of other interests and tried to blame me and my MS. I know now that it would not have mattered if I was a top fashion model. I have lost most of my friends for a variety of reasons since my diagnosis. I am not a terribly social person anyway and never really have been. I am now with a wonderful man that I truly love, and I feel loved. There is a lot more to my story and at this point I do not know how exactly it will turn out. As bad as many of us feel at times (and I have gone as far as contemplating suicide), I believe that we are dealt this hand for a reason. I have gone through so much, but with every turn I seem to come out a little stronger and a little happier as long as I don’t give up. I encourage all of you to stay strong. Keep the few positive connections you have and don’t be afraid to make (and sometimes break) new ones. We all deserve happiness! I wish you all the best, and hopefully, someday soon, I will be able to share my whole story with a very happy ending!

  • Cynde
    2 years ago

    I have a friend who just celebrated a year since she was diagnosed with ovarian cancer. She had surgery and chemo, and is doing very well.Many friends stepped forward to help her – making meals, child care, driving her to weekly chemo – and I’m happy for her she had so much help. But the whole experience lasted less than a year. I’ve had MS for 25 years. All my friends but one have long since faded away. I have a wonderful husband and 3 terrific grown children, but I miss the social life and friendships I used to have. This disease lasts forever. Instead of getting better, it continually gets worse. It’s too much for most friends to take.

  • Lefty Lib
    5 years ago

    This is something I can speak to and in the last several years has caused me immeasurable pain. Diagnosed back in 1990, I’ve had a fairly slow progression rate – I still look “so good”. No one can see what ails me and it’s the explaining I’ve done that’s made me stand out. It’s the inability to drive longer distances (and often in the heat even when the air conditioning is running) that many don’t understand. AC doesn’t help when the heat bakes through the window on your skin… I don’t hear anyone say that “that’s a bummer,” or “too bad.” I have been treated as though I’m making BS excuses… Family members would call me selfish if I complained at all because someone else (a step-relative) also has MS coincidentally, but far worse than mine. Once my father passed 6 years ago, I found out my siblings and others really had no desire to see me, check on my, etc. I have some friends I’ve know since I was 10 (I am 54 now) who just get too “depressed” being around me. Some have said it to others who have said something to me; another insinuating the same thing in front of a couple of friends we were with. The other part is the lack of finances… many of us went to college at the same time. I held a few decent management positions but am now on disability not collecting enough to go it alone (I do have my partner, so don’t want to anyway, but…..). So not only do I have to limit certain things, I can’t participate in those that cost too much, which is most of the time. My partner and I met 14 years ago… after a few different men had basically moved on because the MS was too scary for them. He did not go to college; military instead. He does not make much money so my people may not be too impressed either, and figure I made my own bed… but he is the person who accepted me with all my flaws. He’s loving and understanding most of the time. It is challenging for us, indeed, with many arguments due to my (over)reactions and now inactivity. Without him, I fear the rest of my life would go on continuing to be lonely, and without support. I don’t have children; it will probably be very difficult if he goes before me or gets sick himself. I don’t feel it’s healthy to have just one person who can be there for me. It’s too much for one person! Thanks for letting me express myself!

  • joyfulnana
    5 years ago

    I have multiple autoimmune diseases, started off with Lupus and it has kicked my but. The fatigue is overwhelming! I truly thought my friends were true blue,but it happened at same time we moved to neighboring city. I was dx with Addison’s disease which there is extreme exhaustion and just yesterday with MS after many test. I have literally begged my friends to call or visit. Guess what? They are all gone, except for three, they aren’t able to visit, but every now and then I get email,text or call I am grateful! but the best of all is I know that The Lord Almighty is with me every single moment and when I focus on that, wow,nothing better!

    I am looking forward to meeting new people here. Thank you.
    Joyful nana!
    Lupus, sjogren’s,reynaulds,type 1 diabetis occurring in adulthood,Addison’s disease
    fibromyalgia, removal of colon, pleurisy, asthma,ppneuro.transverse myelitius and MS

  • Marla
    5 years ago

    I think the comments I have seen are very sad. We live in a very selfish and unloving world. I have never been the social bug but have noticed over the years that I do not get invited to many places any more.Doesn’t really bother me that much. Being around a lot of noise causes sensory overload and I lose the ability to think straight. My husband is not a social person… never has been. He is my caregiver and best friend. My children are grown and married but they are there when I need them. I was diagnosed in 2001 and in the spring of 2002 I had a major relapse, I no longer walk quite normally so everyone has to slow down for me, i also get sick to my stomach in the car if not in the front seat. Maybe these are the reasons I don’t get invited anymore. Who knows. Sometimes I wish i could inflict this for just an hour on some people then maybe they would “get it”.

  • Sarah R
    5 years ago

    I believe that one must learn to love oneself, with the disease, and learn to be as honest as you can about it at all times (you can decide when expressing your hardship is necessary.) I suppose I was lucky in that I have always felt myself to be a bit of a “social outcast” while being an intensely loving person. I don’t harbor resentment if people cannot cope with my difficulties; those are their problems and have very little to do with me. I also recognize that I don’t need those people in my life. They obviously don’t support me. The trick to attracting those people to your life worthy of friendship and love is to do your best to love everyone. The world (the universe, God, whatever you call it) will give you what you give it. Much love and support to all of you.

  • Bonnie
    5 years ago

    I lost my husband of almost 20 years because of this disease. He told me the day I stopped working is the day he stopped loving me and that he was tired of taking care of other people and wanted to only think of himself from now on. I stopped working 5 years ago and have been on disability ever since. He continues to say I am faking this disease and he feels I can work. I know – I should be happy to have a shallow jerk out of my life but I continue to feel a great loss of family and a hurt so bad that someone that promised to love me forever did not care enough to stay. I have an awesome boyfriend right now but find myself having a difficult time trusting the relationship because I guess I feel if my husband of 20 years and three kids could do this to me then anyone can. It has completely shattered my trust and ability to fully love right now and I am afraid it will leave me alone for the remainder of my life. My boyfriend insists he will always be here for me but how can I trust that? He gets upset with me because I always tell him I am fine when he can see I am not. My ex husband used to tell me I was always whining about my MS symptons and “crying wolf” so I am so afraid of being honest with my current boyfriend and ending up with my relationship with him ending up in the same failed way my marriage did. I guess I have this giant wall up right now and don’t know how to bring it down 🙁

  • Lefty Lib
    5 years ago

    Slowly…. but try to let him in as much as he seems to want to be. He just might be the complete opposite of your mean ex and surprise you. If he cannot handle it, it won’t be like your marriage ended. You’ll know more sooner; keep a tiny berm up to protect yourself, but no great big wall! I lost a husband too (though no kids, shorter marriage, etc.) but can relate a little. I say let this one know what you can little by little and see how he does… it’s better to know sooner, than spend more time investing in someone who will let you down later….

  • Sarah R
    5 years ago

    I feel and understand you fear and pain Bonnie, I went through the same thing when I was young and am only just now learning to trust again, to be willing to risk myself. This was just shared with a group on fb and really touched me. I hope it might help you. Know you are loved. “Do you know anything about ecology? In ecology they call anything like a fire or a tornado a “disturbance” because it changes the way everything works. We look at that change and call it destruction, and indeed for some organisms it is–animals and plants die in fires and tornadoes. Their fear and pain is quite real. And if disturbances happen too often, the land doesn’t have time to recover and it looses a lot of its identity and power. But usually, the land can recover…though it might not ever be the same way it was before. A new forest grows, a different forest, but it’s still a forest. And a lot of the time the ecosystem as a whole actually depends on disturbance. So, when you look at wildfire, if you look at the scale of individual living things, you see pain and death and loss–and all that is very real. No creature wants to die. But if you step back and look at the whole burned area, you see cycles of destruction and recovery. And if you take another step back, you see that the interplay of growth and loss, life and death is ITSELF the fundamental identity of the land. In our own lives we usually experience things at the organism level of success and failure, pain and pleasure. Or, if we try to step back and look at the larger scale, it’s an attempt to hide from the pain by pretending the personal losses aren’t important or aren’t really painful. And you know perfectly well that’s not true, so it won’t work. But maybe it’s possible to be conscious of all three levels at once, so they are all equally real? Not to deny the pain, but to know there is something larger also? And, most critically, maybe this way we can let go of trying to keep ourselves safe. Because that’s what kills the capacity to love–the belief, or at least the hope, that maybe if you’re more careful next time you won’t get hurt. And in trying to be careful you refuse to grow left you make more fuel for the fire in doing so. The critical leap, the one I’m trying to make in my own life, is not to find a way to believe it’s safe to love again–because it isn’t. The critical leap is to really accept that it is NEVER safe to love. Sooner or later, something else is going to hurt horribly. Maybe they won’t betray you next time–maybe they’ll just die. But it will hurt, and hurt horribly…and in that realization, that acceptance, comes a hint of the courage to love anyway. Be that secondary forest, be the whole ecosystem, AND the individual animals and plants. Give up any idea of avoiding the fire. Be the landscape that occasional fire and repeated regrowth together create. That’s my answer, anyway, at this point in time.” I got this from Caroline Ailanthus on facebook.

  • Sarah R
    5 years ago

    I feel and understand you fear and pain Bonnie, I went through the same thing when I was young and am only just now learning to trust again, to be willing to risk myself. This was just shared with a group on fb and really touched me. I hope it might help you. Know you are loved. “Do you know anything about ecology? In ecology they call anything like a fire or a tornado a “disturbance” because it changes the way everything works. We look at that change and call it destruction, and indeed for some organisms it is–animals and plants die in fires and tornadoes. Their fear and pain is quite real. And if disturbances happen too often, the land doesn’t have time to recover and it looses a lot of its identity and power. But usually, the land can recover…though it might not ever be the same way it was before. A new forest grows, a different forest, but it’s still a forest. And a lot of the time the ecosystem as a whole actually depends on disturbance. So, when you look at wildfire, if you look at the scale of individual living things, you see pain and death and loss–and all that is very real. No creature wants to die. But if you step back and look at the whole burned area, you see cycles of destruction and recovery. And if you take another step back, you see that the interplay of growth and loss, life and death is ITSELF the fundamental identity of the land. In our own lives we usually experience things at the organism level of success and failure, pain and pleasure. Or, if we try to step back and look at the larger scale, it’s an attempt to hide from the pain by pretending the personal losses aren’t important or aren’t really painful. And you know perfectly well that’s not true, so it won’t work. But maybe it’s possible to be conscious of all three levels at once, so they are all equally real? Not to deny the pain, but to know there is something larger also? And, most critically, maybe this way we can let go of trying to keep ourselves safe. Because that’s what kills the capacity to love–the belief, or at least the hope, that maybe if you’re more careful next time you won’t get hurt. And in trying to be careful you refuse to grow left you make more fuel for the fire in doing so. The critical leap, the one I’m trying to make in my own life, is not to find a way to believe it’s safe to love again–because it isn’t. The critical leap is to really accept that it is NEVER safe to love. Sooner or later, something else is going to hurt horribly. Maybe they won’t betray you next time–maybe they’ll just die. But it will hurt, and hurt horribly…and in that realization, that acceptance, comes a hint of the courage to love anyway. Be that secondary forest, be the whole ecosystem, AND the individual animals and plants. Give up any idea of avoiding the fire. Be the landscape that occasional fire and repeated regrowth together create. That’s my answer, anyway, at this point in time.”

  • Jeannie
    5 years ago

    wow, I have had my shares of loosing friends and my best friend. BUT hey they just never understood where i was coming from. I wish i can say my husband is with me but even that is nonexistent. The guy that wanted to marry me bailed on the first huge relapse i had after a long time. My family who has always been with me through these 5 years of MS, were angry on his return with apologies. Being told to wait for a person who will not bail is hard yet i figured I am happy and all i need is my health to be well. I too never go out and when i do its always on my own since no one wants to take me so i ride the trains. lol to me i do so for i am young and i am feeling well that is rare. i also say this cause my life is hard but i like to think i am lucky.

  • BarbaraM
    5 years ago

    This is my story too. I was diagnosed with M.S. in 2005. Since then, I’ve gone through lots of stressful things in my life. The worst of it all is the losing of friends…best friends. They’ve left me, made new friendships and I move on, by myself (with husband also). He is now all I have. Oh, I have friends, but not many and “no” best friends. My good friends seldom call me or ask me to go do something with them. I walk. Don’t need wheelchair. I’m 48 and look pretty good too. Especially with makeup on…then I don’t look like I have M.S. Ha, Ha….what a joke. I miss trusting and having a best friend who will be there no matter what.

  • itasara
    5 years ago

    I can’t say I’ve lost friends because of MS. I am mostly at fault because of the computer age and not wanting to talk on the phone. Those friends who do not do computer I have not had much of a relationship with if any. I feel badly about that but haven’t done much to correct the situation. I do have a couple friends and a lot of acquaitances that I don’t see socially except at religious services or at the grocery store. But in today’s world it seems everyone is busy. I don’t want to drive much these days and just getting out to do a few errands is about all I want to do. I don’t want to entertain either. (I lost my sense of smell and taste so that takes the joy out of preparing meals.) As I mentioned elsewhere I am kind of stuck at home b/c of my dog who cannot walk. I hope someone is attentive to me should that happen to me as I am to my dog. When she is gone, maybe I’ll get back into the loop of doing things socially.

  • Patricia
    5 years ago

    I understand this perfectly. I sit tonight, lonely enjoying the sweet sound of my grand-daughter on the speaker of my phone. Asking so call friends for help is frustrating. They look at my outer appearance and automatically think everything is perfectly healthy with me. But they really don’t see me. Not really. I hurt, it takes everything out of me to participate in after hours activities. They go and go. I try at my own expense to participate but I pay for it in the long run…like sleep and very tired for days to weeks and no one comes by to sit for a while, maybe watch a movie or help build back my spirit to laugh. Friends are absent in my life till I now enjoy just talking 3yr old talk via fb video chat. However, I really wish the best for people, through these tears. Cause it’s so easy to feel like saying, “Don’t wallow in your joy too long. You never know what may happen to you at the slip of a rug”. But I don’t. MS is an invisible mess sometimes to some people. So God bless those with physical symptoms.

  • Lovee
    5 years ago

    I know exact;y what you mean. I have lost friends and family over this. My sister and brother are afraid they are going to be “stuck” with me and I haven’t had a meaningful conversation in years. My husband of 38 years and I have separated and I have no children. Unfortunately when you say you don’t feel good enough to do something, they finally just quit asking. I have had MS since 1972, so I have seen my fair share of people that don’t want to “deal with it”. I have never tried to complain much about it, they don’t understand anyway. It can truly be a lonely proposition. At my age, it can be very difficult to make friends, especially if you don’t get out much. Welcome any suggestions. 🙂

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