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Single, childless and suffering with RA

In various support groups for rheumatoid arthritis, I see so many posts from people whose husband, wife or significant other is unsupportive, has no desire to understand RA and many who ultimately end up with destroyed relationships.

The partners don’t understand the debilitating fatigue. They don’t understand the pain levels. They don’t think the condition or severity is real. They don’t like the limitations it places on their own lives. And so they leave.

But this is not my reality. My reality is I’m 24 and single. I’ve never been in a relationship. And when I think about potential relationships though, I worry at what point I will have to tell them that this disease is destroying me. I worry at what point I’ll have to tell them that I may not be able to work full time or at all by the time I’m 40.

I wonder what man would bother to walk into a relationship with so many limitations, why they would stay with someone likely to be a cripple, when they could find someone active and sporty and as energetic as they are. Why would they choose someone who spends most of their free time in bed?

If I find someone that could accept all these things, could I let them be burdened by my ill health, my limitations, the stress and emotions that come with it all? I struggle to consider that I would enter into a committed relationship, always concerned they might end up resenting me for all I couldn’t do.

Will they hate eating the same meal for the fourth day in a row, because I don’t have energy to cook more than necessary?

Will they despise the fact they have to do housework even though they work more than me?

And would we just end up another marriage or relationship destroyed by this damn disease that seems to rob us of everything else?

If I am to find this crazy man, who can look past all of this, while I am still young enough to childbear, is being a mother something I could actually do?

I held a 9 week old baby recently, and I marvelled at her gorgeous tiny features and how sweet she was when she fell asleep in my arms. And then the pain kicked in. My arms became heavy and weak. My back went into spasms. All for 20 minutes of holding a 9 week old.

How could I rock my screaming child to calm them? How could I hold my baby to breastfeed? How could I play with my toddler on the floor?

Is it really fair for me, if I ever actually get to the point of it being a possibility, to have a child, knowing that I would be half the mother anyone else would be?

Before I even get to actually being pregnant, will it be manageable for me to go off all of the medications that would harm a baby?

I don’t really have any resolutions for these questions. But I do hope I’m not alone in all these questions, in the frustrations of the uncertainty of this disease destroying us.

With all these questions I’ve raised, all these doubts and uncertainties, how do I live with this?
I try to remember that although society seems to say that you are only half a person and need to be completed by a significant other, by an other half, that I am a complete person, on my own.

And although society says that I have value in a relationship and I need a man to look after me, I have value just in who I am, on my own, and I don’t need to be dependent on a man for that, or for anything else.

Although there always seems to be some sort of pressure, sometimes verbalised and sometimes just a silent expectation, that I should be in a relationship and seeking a husband, I am better off in no relationship than the wrong one.

So for my fellow singles, take heart, you are not alone. You have value and are a complete person. Enjoy your friendships and all they have to offer. You are loved with or without a significant other!

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

Comments

  • Mary Sophia Hawks moderator
    11 months ago

    You have so much value! I have been single for 9 years. While some days it would be nice to have someone do the hard stuff, most of the time I am content. I alone know what I need on the bad days, and I don’t have to describe that to anyone. Please know that you have family here! I pray that you can find better relief. Medications in RA are improving all the time. We always have hope.
    MS

  • Monica Y. Sengupta moderator
    11 months ago

    Thanks for the kind and supportive comment, MS. We should never defend what we need for ourselves and hopefully someone understands that and moves forward with us.

    All the best, Monica

  • rockcandi
    11 months ago

    Tegan, I can’t really speak much on the topic of introducing RA to the love of your life (I truly believe there is someone out there to whom you will be the love of his life) as my husband and I have been together since I was 14 years old. I’d been diagnosed with JRA at age 6 but after being bed ridden, relearning to walk, & wheelchair and walker bound, I had a good remission for over a decade. So when I got sick enough to be rediagnosed and needed help to do everything from brushing my hair to tying my shoes, we’d been together for almost half of our lives. But something I am very passionate about communicating to you is the blessing of motherhood. My husband and I lost two babies by the time we were 21 and still weren’t parents of any living children by the time I was re-diagnosed at age 30. After that major flare, even though my deepest desire from the age of 5 had been to be a mom, I began to wonder if it ever would or should happen. I had the same thoughts running through my head. Will I ever get pregnant? Should we try again? Should I go off of my meds, can I without having another major flare? Is it fair to bring a baby into our lives when I won’t be half the mother I would’ve been when I was 21? That was my biggest concern, the fairness of it. Then I surprisingly became pregnant at age 34 and fairness became a non issue. Then the biggest concern was Am I going to be able to take care of a newborn? I’ll tell the truth, the first year of my sons life was the hardest year of my life, physically and emotionally. He was born almost two months premature and thanks to the Good Lord, his biggest issue wasn’t his lungs or his heart but his digestive system. So he had trouble sleeping bc he was so uncomfortable. By the time he was four months old we finally had his formula and medication figured out but bc I’d slept with him in my arms for that four months it was difficult for me to put him in his crib. He would wake up at least every hour, realize he was alone in his crib instead of in Mama’s arms and he’d cry and wail until I picked him up, sat in my straight back chair with his Boppy in my lap and him propped on the Boppy. I was so exhausted, in immense pain, swelled up, and emotionally unstable. I had trouble seeing into the future and truly understanding that it would get better. BUT, I was still full of joy and thanks that I was finally a mommy. The whole of my days and nights were dedicated to my baby boy and I loved every minute of it. Even though it was the hardest thing I’ve ever done, being 35 and wracked with JRA, Lupus and Fibromyalgia and being responsible for care of an infant 24 hours a day (except for Mondays for two hours for Bible study and monthly or bimonthly rheumy appts) it was so totally and completely worth it. And I rarely think about it being unfair to him anymore. Because whatever I’m lacking physically I make up for in love, selflessness, and showing my relationship with Christ to my son. If I’d had him before the age of 30 I wouldn’t have had that relationship to show him, he wouldn’t have been raised to be God fearing and God loving. As he gets older, he understands that he doesn’t play with Mommy the same way he does with Daddy and he’s always been helpful but he’s getting more and more so. I want to raise him to understand that everyone is dealing with something and to show compassion and empathy for every human being and their own struggles and hopes, teaching him how to be selfless and caring, to love everyone despite their circumstances or lots in life. Everything that bothers you or weighs on your mind has a way of working out when you actually have that child you were unsure you should try for. You must be proactive and if you are it will work out one way or another. Best wishes to you no matter what you choose to do in your life or if you choose to allow someone in. Try to remember that it’s more unfair not to allow a man to make up his mind whether he wants to “take you on, disease and all” than it is to decide for yourself that loving you is not worth his being with you “in sickness and in health”. (Or in sickness and in sickness) My husband says that he could never leave me bc he would not only be hurting me but he’d be hurting himself too much. Granted he loved me before he knew our lives would play out this way, but I’m sure of it that there is a man out there who would see past your disease, truly see you and love you with all of his heart. (PS I’m glad that you feel you are a complete person on your own, that’s the most important thing any woman could bring to a marriage.)

  • Monica Y. Sengupta moderator
    11 months ago

    Hey rockcandi! I absolutely love it when you share your story. This was motivating and optimistic. I know it was extremely difficult for you when your son was born but you showed resilience, determination and just plain love.

    I am so glad your husband is of great support. I try to remember that someone will want to do the same for me. I’ve stopped looking for the meantime just because I’m still in my 20s and most people in our 20s are not looking for complications. Why should they? Maybe one day I’ll find that person but right now I’m focused on myself.

    Thank you again for your lovely post!! ~Monica

  • teejay
    12 months ago

    Hey Tegan

    I totally get where you are coming from. I have and am going through the same thoughts. I was 27 when diagnosed now rolling over into 31.

    The view on relationships has always been a complex discussion, but when you throw in a curve ball such as one person having a chronic illness it makes it even more difficult.

    I see a mixture of stories and posts on forums a lot of people speaking out about how RA had strained there relationships and others complementing the enormous support and love they receive from their partner.

    I have been in a relationship previously and after three months I decided to let him know the ins and outs of RA and what the future could potentially hold, and surprise surprise they did a runner. To be honest I merely laughed and thought to myself that it’s probably a good thing because I don’t think I could have been with a man that’s a chicken sh*t and is afraid of challenges. I didn’t let this get to me, I know now from this experience what I am looking for in a relationship and what qualities I need in a man.

    I can’t give you any advice on how to go about of being in a relationship as I am still on the track of learning myself. In saying that this is what I have learnt so far. Teach them slowly about RA and with every negative point we tell them we should try to balance it with a positive.
    I found cancelling out on a few dates can get frustrating but I based it on the activity, what I should have done was change the activity to suit my condition, that way there was less cancellations.
    There is always going to be that pressure that we put on ourselves to find someone to take on this journey. Just need to learn how to control it and sometimes not even think about it too much. From the day we are told you have RA, the everyday society goes out the window, we have our own world, our own society and the best thing about it is that we create it. No one can match themselves to our level and we should never drop to be at there’s.

    The topic of motherhood gets me every time. For those of us whom have a desire to be mothers it’s not the best news to hear from your rheumatologist when they tell you that it is a lot more difficult to fall pregnant, nevertheless there is no reason why you shouldn’t try. On this note all I can say is, if it’s meant to be it is meant to be. I feel that us women with RA will be the best mothers, no matter what pain we endure we will do what we can to comfort our children, and sometimes that thought of putting our child before us doesn’t give us time to let RA take over.
    I am grateful that we are in a century that has modern day equipment, medicines and support that can help us get what we want. Sure it’s not easy and yes we need to go through a lot more heartache but like everything else in this world you fight for what you want.

    Geeze, sorry for the essay, but it’s good to see that your story has sparked something, well at least in me it has. In saying this I haven’t given up on searching for that one and only, however I have stopped for a little bit and I’ll let him find me and while he is travelling to find me I have redirected my myself to strengthen the relationships among my family, friends and colleagues.

    Good luck on your journey, I hope you do find the gentlemen that will sweep you of your feet.
    Chat any time.

  • Monica Y. Sengupta moderator
    11 months ago

    Hey teejay! Your comment really resonated with me because I was diagnosed early on (20, now 28) and have experienced similar circumstances in relationships. One person told me I talked about my RA too much (well, excuse you, can you imagine living with it?? Also, you just confirmed you wouldn’t be able to handle it!) I 100% agree through these experiences I have also learned what qualities I want in a partner!

    Tegan, as well, I thought you might enjoy this article I wrote about our relationship with ourselves: https://rheumatoidarthritis.net/living/the-most-important-relationship-is/

    Right now, like you teejay, I’m working on the relationships I already have and hopefully one day, a new one will appear!

    All the best, and thank you so so much for sharing your story!! ~Monica

  • Richard Faust moderator
    12 months ago

    Thanks for writing Tegan. First, let me say that you are absolutely correct that you have value and truly can be a complete person when single with RA. Second, your concerns about relationships and complications RA can bring are understandable, but certainly not insurmountable. I am the husband of someone with with RA (Kelly Mack – a contributor here), who was diagnosed at two and has used a wheelchair since her late teens. Like you, she was comfortable on her own and writes here about how we met and a surprise relationship: https://rheumatoidarthritis.net/living/surprise-relationship/. I also think you might be interested in this interview she did with me about being married to someone with RA, including may of the issues you bring up: https://rheumatoidarthritis.net/living/husbands-perspective/. Always remember that a full and happy life is possible with RA, with or without a partner. Wishing you the best and know that this community is here for you anytime for information or just a little extra support. Richard (RheumatoidArthritis.net Team)

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