5 ways to keep a relationship strong through chronic illness

All relationships have ups and downs, it can be hard work to keep a strong relationship when times are tough.  I thought I would write about how chronic illness can affect a relationship and ways to get through the shitty times to stay strong together.

I met my husband Timm 15 years ago in a nightclub in Sheffield called The Leadmill , (Im sure EVERYONE in Sheffield met one partner or another there…) we married 10 years ago shortly after I had been diagnosed with Ulcerative Colitis so it is a disease we have learnt about together through the years.  Last year I had a subtotal colectomy and lived with an ileostomy for nine months, then just weeks ago I had pouch surgery to reverse my ileostomy and create a new bowel pouch.

subtotal colectomy end ileostomy surgery ibd ulcerative colitis sheffield sam cleasby

During my ten years of illness I have faced extreme fatigue, bleeding, aching joints, diarrhoea 30 times a day, incontinence, so many different types of medicines and treatments, endless doctor and hospital visits and stays, two surgeries, a compromised immune system that means I pick up every bug going and more days than I can recall that I just couldn’t get out of bed.  During this article I am talking about Ulcerative Colitis but the same goes for anyone living with chronic illness.

1. Be honest with one another

Being chronically ill sucks, it makes you feel alone, and filled with anger, sadness, guilt and hurt.  It is so important to be able to share how you are feeling with your partner and for them to share with you.  It is hard to share those feelings with someone, and even harder to hear them from someone you love, but you need to make time to share honestly and openly.

Without honesty it is easy to start to assume how the other person is feeling.  Right now I am recovering from surgery and I am so exhausted that I spend a lot of time in bed.  I lay here thinking “I bet Timm is feeling pissed off that Im just laid here.  I wonder if he is angry with me? Maybe he thinks I am lazy.” These thoughts tumble round my head and can make me feel shit.  I don’t allow them to though and I spoke to him, explaining my worries.  His answer was that he is a little quiet at the moment because he feels under pressure to be working, looking after the children and caring for me and he was worried he was failing at it all.

Open, honest communication really is the key to any strong relationship.  It may not be easy, but it is vital.

honesty ibd ulcerative colitis crohns

2. Grieve together.

After my surgery I felt a deep, heavy loss.  I mourned the loss of the body I had, the life I had.  My husband mourned the loss of the wife he knew before illness.  We had to face this together so that we could support one another and learn to accept the new body and new life we had.

To move forward together you need to face your joint fears, get through the sadness and feelings of loss together so you can learn a new way to cope.  Your life after diagnosis may be completely different to your life before but it doesn’t mean it has to be worse.

ibd so bad ass sam cleasby sheffield colitis

3. Step into each others shoes.

Life may suck hard for you if you are chronically ill and facing a life that you never planned for, but you need to take a step back and think of things from your partners point of view.  Think about how difficult it is to see the person you love in pain, how it feels to have to take on the lions share of work or household responsibilities, how it could feel lonely or frightening, how you may feel you have to be the strong one all the time.

On the other side partners of those who are ill need to try and look through the eyes of someone who is chronically ill.  Imagine having constant pain and stress, of having continence issues and the whole host of shame and guilt that comes with that, think how it feels to be ill but feel guilty for it, to feel helpless and useless, frightened of both the illness and the affect it has on the people around you.

If you can both do this, then it is an amazing starting point for discussions about love, support and care.

step into my shoes

4.  Stay intimate

Chronic illness means different levels of illness at different times, it is easy to push away your partner, especially when the issue is IBD as having problems with diarrhoea and bleeding don’t really put you in the mood for sex!  But its really important to make sure your relationship with your partner retains some level of intimacy.  A relationship without intimacy is a friendship, which may be fine for some couples but if that isn’t what you want then you need to address the issue.  Its not just about sex, it is about being close, hugging, kissing and showing each other love and care.

Talk openly about what you want and when.  Sometimes I feel that my illness takes away my sexuality, when Im very ill I just don’t feel sexy, I don’t feel desirable or have any interest in sex.  But thats ok when I tell my partner that, when I explain why Im feeling the way I do it is easy for him to understand and respect.  Without talking it is easy for him to feel pushed away and uncared for.

Equally you need to accept that your partner may have fears or issues with being close to you, they may worry about hurting you or making you feel uncomfortable.

The answer is always to talk, talk, talk.

sam and timm cleasby

5. Enjoy the things you have

Ok, things are different, this may not be the life you planned but it is the hand you were dealt so learn how you can make the most of it.  If you are with the person you love then you are lucky, make it work for the two of you! When you are ill then plans of nights out and country walks may be out of the question, but you can replace them with movie nights in or hanging out in the garden.

Show each other that you love one another, there needs to be no grand gestures, this isn’t about diamond rings, it is about saying ‘I love you’, ‘I appreciate you’ ‘You make my life better just by being in it’

enjoy the little things relationships and chronic illness

 

My husband and I have faced the toughest year of our lives, two surgeries, multiple hospital stays, meds, recovery and a lot of tears.  It could have torn us apart, we have been under so much pressure, emotional, financial and physical but it actually has brought us closer together.  We have never been closer in the whole 15 years of our relationship and that has come through us both taking on board these five rules, talking, loving and appreciating one another.

 

Love Sam xxx

 

24 replies
  1. dpawson
    dpawson says:

    You don’t mess about lass, do you. Again well written and helpful. Thanks Sam. (and Timm 🙂 Why don’t you earn your crust with your pen?

    Reply
  2. dpawson
    dpawson says:

    You don’t mess about lass, do you. Again well written and helpful. Thanks Sam. (and Timm 🙂 Why don’t you earn your crust with your pen?

    Reply
  3. z__f
    z__f says:

    lots of wisdom in this! I suffer from chronic pelvic/hip pain and very bad IBS. Nowhere near as tough as IBD, but it still has a big affect on what I can do and how I feel, makes me tired, in pain and sometimes anxious, and this all chimes with my experience of being in a couple and how we have tried to deal with it all together.

    take care
    xxx

    Reply
  4. z__f
    z__f says:

    lots of wisdom in this! I suffer from chronic pelvic/hip pain and very bad IBS. Nowhere near as tough as IBD, but it still has a big affect on what I can do and how I feel, makes me tired, in pain and sometimes anxious, and this all chimes with my experience of being in a couple and how we have tried to deal with it all together.

    take care
    xxx

    Reply
  5. jybarebeginnings
    jybarebeginnings says:

    Oh god I needed to read this, currently having lots of investigation around a few symptoms that gave plagued me since I have had my kids. I have put everything on hold because of it, and can feel myself walking further away from my love, because let’s face it, it’s embarrassing to not be able to get out of bed, to truly be able to take care of your family. What do you say when someone asks you how you are 10 times a day because they love you and the honest answer is that you feel like shit, and would rather not be asked. But we are not mind readers after all, and though talking can be hard it does make everything easier once it’s been said. Thankyou for sharing and reaffirming this.

    Reply
  6. jybarebeginnings
    jybarebeginnings says:

    Oh god I needed to read this, currently having lots of investigation around a few symptoms that gave plagued me since I have had my kids. I have put everything on hold because of it, and can feel myself walking further away from my love, because let’s face it, it’s embarrassing to not be able to get out of bed, to truly be able to take care of your family. What do you say when someone asks you how you are 10 times a day because they love you and the honest answer is that you feel like shit, and would rather not be asked. But we are not mind readers after all, and though talking can be hard it does make everything easier once it’s been said. Thankyou for sharing and reaffirming this.

    Reply
  7. snyderreunion2014.Com
    snyderreunion2014.Com says:

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    Reply
  8. snyderreunion2014.Com
    snyderreunion2014.Com says:

    Hello I am so happy I found your weblog, I really found you
    by error, while I was researching on Yahoo for something
    else, Anyways I am here now and would just like to say kudos for a tremendous post and a all
    round exciting blog (I also love the theme/design), I
    don’t have time to browse it all at the moment but I have book-marked it and also added your RSS feeds, so when I have time I
    will be back to read much more, Please do keep up the fantastic
    jo.

    Reply
  9. kyraG
    kyraG says:

    I really appreciate this post. I was diagnosed with acute crohn’s/colitis at 16 and while my S.O. was in my life for many years before we started dating in this past year I have been facing the worst flare since the point of diagnosis. While he has always been involved, understanding, supportive, and aware of the challenges chronic illness presents we have certainly found ourselves in new an uncharted waters as doctors are giving up, surgery is not a current option due to the extent of the disease, and each treatment option continues to get ticked off the list with no response all on top of moving 1000 miles so he could pursue career options which could actually provide for us. Looking forward to checking out more of your posts!!!

    Reply
  10. kyraG
    kyraG says:

    I really appreciate this post. I was diagnosed with acute crohn’s/colitis at 16 and while my S.O. was in my life for many years before we started dating in this past year I have been facing the worst flare since the point of diagnosis. While he has always been involved, understanding, supportive, and aware of the challenges chronic illness presents we have certainly found ourselves in new an uncharted waters as doctors are giving up, surgery is not a current option due to the extent of the disease, and each treatment option continues to get ticked off the list with no response all on top of moving 1000 miles so he could pursue career options which could actually provide for us. Looking forward to checking out more of your posts!!!

    Reply
  11. Melina
    Melina says:

    This post has made me sad. I had been married for 22 years to the man I thought was my soul mate, my one true love. I thought we’d grow old together as that was what we’d planned. However it seems he could not handle me being unwell. About five years in to our relationship I was diagnosed with anxiety & depression & have been medicated ever since. But since the birth of our second child three years ago I have had increasing bowel problems, and now have been diagnosed with colonic inertia, likely caused by the two pregnancies and subsequent cesarians, plus the ectopic pregnancy between the two pregnancies which burst my fallopian tube & caused the removal of the tube and one ovary. My surgeon thinks the nerve damage started somewhere in there & continues to degenerate. I only go to the toilet once every four to six days & spend the entire time feeling nauseous, in abdominal pain, bloated & intermittently fecally incontinent. I also have a bladder prolapse so it’s hard to wee too. I have gained a fair bit of weight, throughout our marriage I was a fairly steady size 12 but now I am a size 16. Understandably (I thought) feeling so sick meant I didn’t feel very desirable or like having sex, & life for the past six years has been full on with two children, the youngest of whom is extremely high needs. I thought we were communicating pretty well about all this, but apparently all this made my husband feel like I wasn’t giving him enough attention, but that I also wasn’t giving myself enough attention or I would be fitter & thinner & feel better, & that working full time to support us while he ran an unsuccessful part time business & took the children to daycare & school meant that I wasn’t pulling my weight around the house. Next month I will be having an ileostomy bag put on & if my small intestine can handle life on it’s own I will then be getting my useless large intestine removed. Maybe then I’ll have no constant pain in my gut, excessive bloating, exhaustion and nausea. But in September last year my husband told me he didn’t see a future for us any more and that he didn’t love me, and in December he moved out. So now I am a 42 year old single mum working full time. I feel like a complete failure, very unattractive, exhausted and like I will be alone for the rest of my life. But I am not miserable, just sad. I look forward to feeling better soon, & hopefully raising my boys to see that a person’s soul is more important than how they look or what size they are. My husband continues to be involved in his son’s lives, & I just hope I can work towards being well and happy. Thanks for taking the time to read this.

    Reply
  12. Melina
    Melina says:

    This post has made me sad. I had been married for 22 years to the man I thought was my soul mate, my one true love. I thought we’d grow old together as that was what we’d planned. However it seems he could not handle me being unwell. About five years in to our relationship I was diagnosed with anxiety & depression & have been medicated ever since. But since the birth of our second child three years ago I have had increasing bowel problems, and now have been diagnosed with colonic inertia, likely caused by the two pregnancies and subsequent cesarians, plus the ectopic pregnancy between the two pregnancies which burst my fallopian tube & caused the removal of the tube and one ovary. My surgeon thinks the nerve damage started somewhere in there & continues to degenerate. I only go to the toilet once every four to six days & spend the entire time feeling nauseous, in abdominal pain, bloated & intermittently fecally incontinent. I also have a bladder prolapse so it’s hard to wee too. I have gained a fair bit of weight, throughout our marriage I was a fairly steady size 12 but now I am a size 16. Understandably (I thought) feeling so sick meant I didn’t feel very desirable or like having sex, & life for the past six years has been full on with two children, the youngest of whom is extremely high needs. I thought we were communicating pretty well about all this, but apparently all this made my husband feel like I wasn’t giving him enough attention, but that I also wasn’t giving myself enough attention or I would be fitter & thinner & feel better, & that working full time to support us while he ran an unsuccessful part time business & took the children to daycare & school meant that I wasn’t pulling my weight around the house. Next month I will be having an ileostomy bag put on & if my small intestine can handle life on it’s own I will then be getting my useless large intestine removed. Maybe then I’ll have no constant pain in my gut, excessive bloating, exhaustion and nausea. But in September last year my husband told me he didn’t see a future for us any more and that he didn’t love me, and in December he moved out. So now I am a 42 year old single mum working full time. I feel like a complete failure, very unattractive, exhausted and like I will be alone for the rest of my life. But I am not miserable, just sad. I look forward to feeling better soon, & hopefully raising my boys to see that a person’s soul is more important than how they look or what size they are. My husband continues to be involved in his son’s lives, & I just hope I can work towards being well and happy. Thanks for taking the time to read this.

    Reply
  13. Ella
    Ella says:

    Wow. This has made me happy/sad. Happy that what we’re going through is ‘normal’ but sad that we’re having to go through it. I’ve only recently discovered your blog, but it’s helping me so much. Not as a sufferer of IBD, but as the wife of a man with Crohn’s who has an ileostomy and battles everyday with his illness. I love his bag. It saved his life. He, however, thinks it has ‘ended’ his life. He’s finding it difficult to adjust. I’m understanding and supportive as I can be, but worry about being patronising or somehow dismissive of what he’s going through. But I’m also angry at his illness and what it’s done to him (and to us). Note that I said I’m angry at his illness, I’m not angry at him. But I still feel guilty for thinking that. Thank you for your honesty in this and other posts. It’s like reading ‘our’ story.

    Reply
  14. Ella
    Ella says:

    Wow. This has made me happy/sad. Happy that what we’re going through is ‘normal’ but sad that we’re having to go through it. I’ve only recently discovered your blog, but it’s helping me so much. Not as a sufferer of IBD, but as the wife of a man with Crohn’s who has an ileostomy and battles everyday with his illness. I love his bag. It saved his life. He, however, thinks it has ‘ended’ his life. He’s finding it difficult to adjust. I’m understanding and supportive as I can be, but worry about being patronising or somehow dismissive of what he’s going through. But I’m also angry at his illness and what it’s done to him (and to us). Note that I said I’m angry at his illness, I’m not angry at him. But I still feel guilty for thinking that. Thank you for your honesty in this and other posts. It’s like reading ‘our’ story.

    Reply
  15. pawsitiveHeather
    pawsitiveHeather says:

    I don’t have a chronic medical illness, but I do have bipolar type II. I want to keep my relationship strong, and talking about my feelings is so fucking hard. I hate doing it, I hate feeling the way I do, and I wish I could just be normal and not feel like I do. This really helps. I don’t want to lose him because I’m fucked up.

    Reply
    • sam
      sam says:

      Im sorry you are struggling. I know it is hard, I know the words stick in your throat and it feels too much. But try and talk. You are not fucked up, you have an illness. Stay strong xxxxxxxx

      Reply
  16. pawsitiveHeather
    pawsitiveHeather says:

    I don’t have a chronic medical illness, but I do have bipolar type II. I want to keep my relationship strong, and talking about my feelings is so fucking hard. I hate doing it, I hate feeling the way I do, and I wish I could just be normal and not feel like I do. This really helps. I don’t want to lose him because I’m fucked up.

    Reply
    • sam
      sam says:

      Im sorry you are struggling. I know it is hard, I know the words stick in your throat and it feels too much. But try and talk. You are not fucked up, you have an illness. Stay strong xxxxxxxx

      Reply
  17. Missy
    Missy says:

    Thank you for this. My husband has been dealing with a chronic intestinal motility disorder for a year and with no end in sight. He is functional but it is so hard on us, and I have to work to find the healthy way to approach this new phase. But I know I have the strength and can find the grace. People have and do endure far worse than us, and if he needs me, he deserves my best. But I also know I can only give my best if I take care of myself as well. It isn’t the happily ever after we dreamt of after only two years of marriage – he’s so young, I didn’t imagine we’d be facing health issues so soon – plus we have a toddler and I had hoped to have another baby – which is hard to imagine right now. But he is a wonderful person and is being so strong. My heart breaks to see him struggling like this. But everyone is called to bear hardship – the question is what will you do with the obstacles placed before you – will you (as asked in The Shawshank Redemtpion) get busy living, or get busy dying? Yes days of grief and weakness are allowed – but i want to point our compass toward making the best of whatever we face, together. Thanks for the tips and encouragement. Best to you.

    Reply
    • sam
      sam says:

      Thanks so much for sharing. You are so right in the question of whether we should “get busy living, or get busy dying?”. I love that quote!

      You sound like a wonderful wife xxxx

      Reply
  18. Missy
    Missy says:

    Thank you for this. My husband has been dealing with a chronic intestinal motility disorder for a year and with no end in sight. He is functional but it is so hard on us, and I have to work to find the healthy way to approach this new phase. But I know I have the strength and can find the grace. People have and do endure far worse than us, and if he needs me, he deserves my best. But I also know I can only give my best if I take care of myself as well. It isn’t the happily ever after we dreamt of after only two years of marriage – he’s so young, I didn’t imagine we’d be facing health issues so soon – plus we have a toddler and I had hoped to have another baby – which is hard to imagine right now. But he is a wonderful person and is being so strong. My heart breaks to see him struggling like this. But everyone is called to bear hardship – the question is what will you do with the obstacles placed before you – will you (as asked in The Shawshank Redemtpion) get busy living, or get busy dying? Yes days of grief and weakness are allowed – but i want to point our compass toward making the best of whatever we face, together. Thanks for the tips and encouragement. Best to you.

    Reply
    • sam
      sam says:

      Thanks so much for sharing. You are so right in the question of whether we should “get busy living, or get busy dying?”. I love that quote!

      You sound like a wonderful wife xxxx

      Reply
  19. Anna
    Anna says:

    Thank you for your blog Sam! I’ve only just discovered it.

    You are so incredibly brave, honest, beautiful and talented. Thank you for sharing your story with the world. You help a lot of people by doing this. Thank you!

    Reply

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