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slow dancing in my wheelchair: 10 tips about chronic illness & romantic relationships

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They say you fall in love when you least expect it.

I have always found this to be true. I have been in love as an adult three times in my life and each time was unexpected. I wasn’t looking, just doing my usual weirdo bookworm introvert thing and…

then BAM!

The entire experience of someone I didn’t “see” coming and sweeping me off my feet was always tremendous and life changing.

I suppose you could say the same for chronic illness and pain.

It blindsides you much like love but only leaves chaos in its wake like a bad break up that never ends. Its a heartbreaking thing and will affect everything including and especially your primary relationship, your significant other.

I call the first year of my relationship with my husband “The Good Year”.

We met, fell fast in love, and began to merge our lives together over the next 365 days. I saw the constellation of freckles on his shoulders one early October evening and said to myself “our babies would have freckles” as I am pretty freckled myself. I knew then I was head over heels for him.

That first year was marvelous, hands down one of the best years of my life. I had met someone who “got me” and who could love all of me without fears of commitment. He was smart, funny, unbelievably handsome. He liked books, good movies, and cooking me breakfast after I came home from a long run. He introduced me to Studio Ghibli films, graphic novels, and allowed me to indulge the nerdy side of myself.

Just the sight of him made me dizzy sometimes.

This is the last photo I have of myself/us right before I developed CRPS, 6 months later I would get sick with Lyme. How happy we were back then. How much we didn’t what was coming.

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Then our worlds flipped upside down and back again. 

I got sick with CRPS in 2011, almost a year from when we met. It didn’t greatly impact our lives too much besides me sometimes crying at night in pain and struggling through the work day some days. Then I got sicker with another (Lyme disease/Bartonella) in 2012 almost 6 months after the CRPS and when it hit, it hit hard.

***

It’s 4 months from our wedding day and instead of joyfully planning things, Im sitting with my PT while he looks at my grimly and says “Im worried you have MS”. I could barely walk at this point. I looked like Quasimodo, hunched over and walking slowly. I was constantly curling into myself as if I could just hold my body close enough I could calm it down. Nothing made sense, my reflexes were off and I got weird electric shocks from people just touching me. My right breast felt like ice cubes were always on it. My scalp constantly felt like someone was ripping my hair out and I had to lay down to rest after climbing stairs.

My brother asked my mom if I was dying. Many tears were shed as I declined and the list of symptoms grew and grew.

It was a wild dark time, Sean’s mom had died two months before, no one could tell me what my left foot hurt so much, and this bizarre new illness was the last thing we needed. I have never been so scared in my whole life as each week I got sicker and sicker and NO ONE could tell me what was wrong.

I finally got a diagnosis of Late Stage Lyme Disease exactly one month before we got married.

I never imagined that while planning a wedding to the dude of my dreams that I may not be able get myself down the aisle because of extreme joint pain or that I would be on pain medication just to get through my wedding day.

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photo by purple fern photography

Thankfully I was able to walk down the aisle myself but I took pain meds 2x that day just like I did every day, a bitter reminder of how much our lives had changed that year. I struggled through our honeymoon, my pain often keeping us from adventuring and instead sticking close to the hotel room.

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having a rough pain day a few weeks after we got married.

Friends joked that we were getting the “in sickness and health” stuff out of the way first. As my illnesses progressed over the years this joke became less funny and more sad. Really sad.

Being chronically ill can change everything in your life but one thing that usually gets hit the most is your relationships, specifically the one with your romantic partner (if you have one).

However long you were together “before” and the roles you each inhabited within the relationship, those roles change. The changing is hard, frustrating, and painful for both of you. Before I got sick, I was the breadwinner and did most of the cleaning in the house. I could pick up groceries after work and feed the dogs in the morning while Sean still slept. I was equal partner in our relationship, someone who could pull their own weight.

It all changed when I got sick.

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my first photo in the wheelchair. my husband looks SO handsome.

So what in the world do you do as a couple to navigate these HUGE losses and deal with the ups and downs of chronic illness?

Well…here’s some tips from us that may help you.

1. Be honest and communicate

 I know I know this is kind of important advice for ALL couples but I want to especially focus on it discussing chronic illness and relationships. I have found its best to keep talking, keep telling each other whats going on even when its uncomfortable or scary. Its SO easy to get cut off from one another and that will over time create a split in your relationship. I used to keep things from Sean because I thought I was “doing him a favor” by not telling him how bad stuff was, he let me know repeatedly that he wanted to be fully a part of my life and that “protecting him” just put distance between us.

2. Accept that there will be resentments on both ends

I had a spectacular home nurse last year who I became close enough to that we would talk sometimes the entire few hours that I got my weekly IVIG infusion. One day we talked about how Sean was doing with everything and Charles (Charles I miss you!!!) told me that I needed to give Sean room to be angry and resentful. It was fantastic advice. Its hard to watch the person you love become sick and it SUCKS to have so much more riding on your shoulders.

You miss your partner and you can sometimes feel resentful of all the changes that happen EVEN THOUGH you cognitively understand that it isn’t your partner’s fault. The person who is sick may also feel resentful. Its hard to not be jealous of your partner’s ability to go do what they want and it’s lonely to be sick alone at home because your partner is out trying to conquer the world because you can’t. Talk about it and don’t take the resentment personally if you can. I like that Sean can tell me that sometimes he’s angry or resentful and it doesn’t hurt my feelings because I know he needs to be able to say it without me getting mad.

3. Make time together

Being sick can ZAP the romance out of your relationship real quick. Gone are the days of date nights and going out sporadically. That doesn’t mean you can’t spend time together, it just means you have to be a little more creative. Set aside a night at least every other week where you are together-no phones, no computers for a few hours. Watch a movie and get some take out or make a quick easy meal you both enjoy. BE with each other. Do a picnic in bed or a picnic outside if your body can tolerate it. Play board games or do a puzzle together. Put on your favorite song and slow dance or just hold hands while sitting side by side. Read a book and take turns  reading out loud to one another.

Just make sure to BE WITH EACH OTHER in shape or form once a week or at least a few times a month.

4. Intimacy may look different than before

 Im going to be real frank here so listen up. Your sex life may suffer when you are chronically ill and pain. You may be too tired to do it or you may be in too much pain. Lots of medications like opiates and SSRIs can do a real number on your sex drive. Some people hare chronic pain in their private parts which makes sex sometimes almost impossible.

I know for myself being touched anywhere is sometimes too uncomfortable, I have nerve damage in my groin, and my ongoing nausea is a real mood killer too. Its upsetting, embarrassing, and frustrating. I used to beat myself up about this constantly and get stuck in an inner dialogue of what a terrible unsexy partner I was. DONT DO THAT.

One thing that I have learned through this experience is stop viewing sex through a heteronormative len. Sex doesn’t always equal putting part a in part b…sex and intimacy can happen in all kinds of variations and ways. Stop beating yourself up over what you used to be able to do sexually and focus on what you can. Intimacy is intimacy and chances are your partner will be grateful for whatever you can do, just be intimate with another in whatever form you can. If they aren’t appreciative or complain a lot or make you feel guilty….ditch their ass to the curb. These links have some helpful tips (one, two) and www.chronicsex.org is FANTASTIC.

5. Don’t talk about your illnesses 24/7

I know its hard when your body dominates your brain 24/7 but lets face it. Talking about illnesses, pain, and medical stuff gets boring…FAST. I know I get really sick of talking about it. I know Sean does too. Sometimes he will just say “Ok I need to change the subject” and sometimes I just do my best to spend the day without bringing up my body. You both know what’s going on and you both need a break. YOU are not just a sick person and YOUR PARTNER is not just a care taker.

Chronic illness can complicate things but you are STILL YOU, the couple you were at the beginning but wiser and more wary.

6. Understand that one of you doesn’t have it worse than the other

I once read a post on reddit.com’s popular “subforum” Relationships, it was from a man whose wife was chronically ill but seemed to have given up on life and expected her husband to not have a life outside the house. I commented about my/our experience and then saw a comment from someone who was also chronically ill. One thing that immediately stood out to me was “She has it worse than you”. That comment bothered me a great deal.

I think its dangerous to think that you ever have it worse than someone else and I think its also not good to think you have it worse than your spouse. Yes I understand that I deal with things Sean doesn’t-24/7 chronic pain, chronic nausea almost as bad as my pain, being disabled. That being said, Sean deals with things I don’t. He mourns the woman he met and fell in love with, he deals with powerlessness as he watches me writhe in pain. He often has WAY more responsibility because I can’t contribute.

YOU both are dealing with tough situations and being competitive about who has it worse is toxic to your relationship.

7.  Have outside support

Social support when going through hard situations is so imperative. I have found that it’s especially important with chronic pain. You both need to people to lean on as you navigate this hard journey together. Just relying on each other isn’t enough. You each need friends and family members to talk to, to go out and do things with, and someone who will give you advice when you need it. Your partner may sometimes feel emotionally tapped out so you need others to help out when you are feeling blue or frustrated with the situation at hand.

8. Be clear in what you need from one another

Some days I just want Sean to read my mind and understand what I need/want that day. Im sure he feels the same. Unfortunately neither of us is a mind reader. Assuming your partner understands you may need more help because you are in a flareup or assuming your partner senses you are stressed out from having more responsibilities means a fight or argument may ensue. Even though our partners may know us VERY well, you can’t believe that your partner ALWAYS knows what you need. Some days I want Sean to hug me if I am having a bad pain day, some days I don’t want to be touched but I want him to sit next to me for a few minutes. He may not always know what I need that day, so I need to tell him. This goes for Sean as well.

9. Do some counseling

Sometimes couples counseling is necessary. DON’T feel guilty about that. It can be hard to figure out how to deal with the BIG emotions that come with chronic illness. Tension can run high and you may fight more than you used to. Sean and I have done a few sessions of couples counseling and its been immensely helpful. We can talk in a safe space with someone who has no ties to us and have helpful advice about certain dynamics we run into. Going to see a counselor doesn’t mean your relationship is BAD, you just are going in together to get a “tune up” and strengthen your bond.

10. Dont compare the present to the past

This one is a hard one. As I recently talked about in another post, it’s so easy to get caught up in mourning for the past when you were once healthy. You both yearn for those times when things were more simple. You may compare things about your relationship to “before”. Try not to compare though, your relationship can be just as important, worthy, loving, and fun as before you became chronically ill, it just will look different.

You may find that you are even closer than before you were sick because of what chronic illness can do to your heart and soul. You see sides of each other you never saw, you may see kindness and strength in parts of your partner you didn’t know existed. I know I have seen wonderful sides of Sean because of me being sick. He is so giving, so kind, and takes incredible care of me. I had seen these parts of him before I was sick obviously but how incredibly selfless he is has been amplified 100x from our current situation with my health. He has said the same thing about how I supported his mom through cancer and then supported him with her passing.

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cuddling during my first ketamine infusion

Relationships are work and I truly believe that a long term partnership is more about how you handle the hard stuff together than it is about the easy good times. I told Sean when we got married that wherever our journey together takes us, I would walk with him through thunderstorms and dance with him in the sunshine.

We began our life together on a day with blue sky and no clouds…

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our engagement shoot photo by purple fern photography

we have weathered so much hardship, sadness, and many metaphorical thunderstorms. We have walked in the dark and lost our path several times.

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photo by Doug Stanford | Post + Production

There’s no one I would rather do it with whether I walk beside him or roll. Our love can survive anything and I love Sean so much more deeply since I have gotten sick.

I hope these tips help you and your partner navigate the rocky road of chronic illness.

What things have YOU found helpful with chronic illness and relationships?

xogen

15 thoughts on “slow dancing in my wheelchair: 10 tips about chronic illness & romantic relationships

  1. While neither D nor I are chronically ill, I think a lot of these tips can apply to everyone’s relationships.
    When D’s Mom died, it was really, really, really hard for me. I felt like I couldn’t openly grieve, because after all – it wasn’t my Mom who died. But, my Mother-in-Law died before we really ever got to develop a relationship. I was grieved for D, but I also grieved for myself, because I would never, ever get to have a relationship with my Mother-in-Law. Major traumas, whether physical or emotional, hit everyone involved differently. I think it is good to share grief, but I also think it’s good to grieve separately.
    I also think it’s important to not lessen your own struggles/feelings/grief/hardships simply because someone else has it worse. The worst thing that has ever happened to you is still the worst thing that has ever happened to you – even if a worser thing has happened to someone else. Diminishing your own feelings, simply because they “aren’t as bad” as someone else’s, doesn’t help anything. The worst thing that has ever happened to me is not nearly as bad as the worst thing that has ever happened to a lot of my close friends and family. But it’s still the worst thing that has happened to ME.

    1. I definitely understand the grief that you talk about with your mother in law. I wish I had had more time with Robin, even if she drove Sean and I crazy some days. Its so hard to see the person you love most so deeply hurt and sad. Watching Sean grieve his mom feels like someone has carved my heart out some days.
      I understand what you mean about not minimizing. I think to just is very prevalent within the chronic illness community to get competitive and have this hierarchy of who is the sickest SO I try very hard to not play into that, especially given that by a lot of people’s standards I am pretty sick (wheelchair, brain damage etc) I definitely don’t play down what I have going on but I am just trying to understand that I have it SO good compared to others. Im very isolated because I don’t work or drive and I just don’t want to indulge that side of my brain by focusing on how hard life can be for me if that makes sense. I don’t want to live in that mindset anymore. xo.

  2. This is wonderful advice and I read this post and felt myself tearing up a little as I could relate to your story. I was lucky that– although I was showing symptoms at the time– the brunt of my illness came following my wedding day. I too went from the breadwinner to being completely reliant on my husband for pretty much everything. It’s challenging but has also strengthened our relationship in many ways. Thanks for sharing.

    1. Its very challenging and I feel like you get used to one aspect and than another arises or some symptom gets worse. Sean often says that nothing is ever constant in our life and I always think in my head that “well me feeling terrible is constant”. Keep at it, lady its a long hard road but how lucky we each are to have someone to walk it with (or roll).

  3. Hi
    Just want to say how amazing you both are and how you both cope with what you have so well, your tips I will use in my relationship. I have ME/fibro and to people and my husband I look so well but inside me it’s a different story, I got fibro two years after I married and a year after that ME although I wasn’t diagnosed till 2015, my husband wishes I was the person I was before and finds it hard to eccept me as I am now and I do as well, we don’t have support as his family live over 350 miles away I can’t travel like I did and do the things I did but I do what I can, our relationship is like a carer not a wife and husband, how to change that I don’t know but will try your tips.
    Thank you for telling your story, I wish you well in the future.

    1. Hi Julie,
      It has taken us almost 5 years to figure it out and sometimes we do a great job and sometimes we don’t. I can definitely relate to your story, we lived far away from almost all family until last year and going on trips is very hard and painful in my wheelchair. It’s so hard to live away from close friends and family as not having help as it puts so much pressure on the “caretaker” and then your relationship. There’s a fantastic book called “How To Be Sick” you should check out, its a book for those who are chronically ill AND their spouses/caretakers. I think it may help each of you find some peace and acceptance. Sending you love.

  4. I suffer from chronic illness too and in fact at first I couldn’t read this as I almost knew what was going to be said as I could have almost written a lot myself. When I did read it the tears fell like a waterfall. It’s heartbreaking the way relationships change and it’s almost like you mourn your old self, old life and old relationship… Much love and gentle hugs to you both. Xxxxx

    1. Hi Mandie, thank you so much for reading and I am so sorry that you too deal with chronic illness and pain. It is heartbreaking and so many other things. I try to believe theres some reason or purpose for the experience but as Im sur you know, some days it’s hard to find any reason as to why someone suffers. Sending you love on your own journey through this maze called life!

  5. I could relate and appreciate everything you shared here, Genevieve. I definitely feel like acknowledging the weight of this struggle on them is powerful. Recognizing that has led me to make it a priority to check in with him, see how HE is doing with it. Our husbands are very similar in their caring, protective, “I want to know what you’re going through” ways. It is truly a gift I always want to reciprocate. Thank you for sharing from your heart(s). I loved reading every word.

    1. Hi Kami, I definitely think that making sure your partner feels that their needs and feelings are equal is SO important. I know Sean sometimes feels like all the attention is on me. Our caretaker/spouses/partners deserve the same amount of attention and support. Thank you so much for reading <3

  6. I was sick when I met my husband, so he did know what he was getting into. We’ve been together 4 years now and we have definitely had ups and downs as my illnesses progress, change, and go in and out of remission. Communication is key. Also, we don’t go to couples counseling but we both go to individual counseling. Having other people to complain to helps us keep from building up negativity.

    1. Hi Brittany, Im sure there’s different complexities that come when you have been sick before you met your spouse/partner. I would love to read about what that’s like and if it’s different in some ways from what I have written about with this blog. Counseling is such an important tool, I know my therapist helps me a great deal with navigating my many feelings about being sick and how I deal with it.

  7. Dear Genevieve,
    What an amazing story. I’m still tears. I felt as if you were telling some of my story.
    Although Im not ss sick as you, I have fibromyalgia, diabetes, diabetic neuropathy and other dx’s. But yes I know all the same feelings but you just put them into perspective. Now understanding there is a light at the end of the tunnel brings me hope. The list of 20 items is something I never thought of, but how right you are.
    I should be walking with a cane all the time but I am so afraid of humiliation. I fall quite a bit when thw weather changes so I should use my walker but I’m again. I’m afaid.
    I saw your picture dancing with your husbsnd and you are such an inspiration.
    Thank you so much.
    Always, Denise

  8. I’m exhausted right now and can barely write, but I just wanted to let you know that your story is beautiful and you provided wonderful nuggets of wisdom on relationships, Genevieve. You and your hubbie are adorable.

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