Dear future partner,
We haven’t met yet, or maybe we have and time wasn’t ready.
We need to talk. Now. Before I fall in love with you, before you fall in love with me.
Because I don’t want my disease to cause you to leave me.
Too often I see sad posts in online support communities for severe disease groups. Like this one:
“My spouse just asked for a divorce after 25 years of marriage. She said she could no longer handle being married to my condition. I work full time, I do chores, I am a great partner and parent. I just can’t hide when I’m having such bad pain. I feel so alone. Can someone share how they got through this? How can I be in another relationship if I know my disease could cause someone to leave?”
These posts wrench my stomach. I cry, “Another one?” And I have two reactions: hope and fear.
Hope. Hope that I’ll be one of the fortunate ones; that I’ll beat the odds and my marriage vows won’t turn into, “‘Til disability do we part.”
Fear. Fear that I will not find a partner to embrace me, disease included, for the rest of our lives. Fear that I’ll fall head over heels in love with someone who will look at me one day with eyes that can’t see past my disabilities, and give up on me.
Who will want me when I’ve been dumped? When my health will be worse and my market value has plummeted beyond repair?
Dear future partner,
I will push you away before I allow myself to trust that when you say “in sickness and in health,” you truly mean it. I am filled with self-doubt because I have no way to prove that you won’t leave me. Popular articles romanticize that it is harder to maintain a relationship when one of us is sick with a lifelong disease or disability.
There are also plenty of love stories celebrating people’s comitted relationships. These relationships deserve every joy that exists, just like most relationships; but such public-facing stories celebrated by media are rare.
I want to be “rare.”
I am not like other people. I know I am amazing in a lot of ways, one being that I am a survivor. While I have no choice but to fight to survive (the essence of which defines my amazingness), it gives me the strength to believe that one day I will find someone who will fiercely and tenderly hold me from day one through infinity.
I’m fiercely independent. I’ve always taken pride in being self sufficient. I am stubborn to a fault. I’ve had to be, it’s a survival mechanism. You will tell me not to do things, but time and time again I will do them anyway, even when I agree with you that I shouldn’t. You will say, “I want to protect and preserve you so I have you for as long as possible.” Thank you for being selfish, in advance, because it could save my life one day – that is, if I listen to you.
But one of the most important things is for me to be selfish, too. While you are thinking I shouldn’t do this thing, I am thinking the reverse. What will life be in 5, 10, 30 years if I look back and realize every decision was an effort to protect me from myself? I don’t want to simply survive, I want to live! What will carry me forward if I have taken no risks, if I haven’t pushed beyond the bubble of safety? Caged chickens deserve a glimpse outside their walls even if their legs are too weak to go far.
I’m sorry, partner, that after I do what I shouldn’t and I am in bed crying in pain, I will expect you to hold me. You won’t understand, but you’ll bite your tongue instead of saying, “Tsk, tsk, you should have listened to me.” You’ll let me cry until the neighbors think someone died. You’ll let my snot run all over your chest and you’ll tell me I am beautiful even if my eyes are so puffy I can’t see your face. You won’t understand, but love doesn’t require understanding to be unconditional.
I will need you more than you will be prepared to give. Our relationship will look different than our dreams. It may sometimes seem that you live alone, except then there’s me in the recliner while you wash dishes. You’ll feel more like a nurse or doctor sometimes, giving me shots, bathing me when I can’t do it myself, staying up all night when I’m afraid I will die if you’re not there to monitor me. I’ll often be sad or angry and you’ll have to figure out what to do to make me laugh again.
I will be needy. I won’t want to go to my doctor appointments alone. There will be nights I spend 9 hours trying to fall asleep; you’ll wake up for work and I’ll be there looking at you, waiting to be held. When you come home you’ll find me crying on the kitchen floor because I dropped my favorite glass just trying to put it away.
Sex will involve more than making each other feel good. Our intimacy will include stretching my hips after intercourse and holding me when my back spasms. I can still feel really good, but we have to work harder at self care and be more cautious than perhaps we’d like.
I will push myself to pursue activities with you even when they hurt me. I will encourage you to go for it, even when it is something I can’t do anymore and it hurts to watch from the sidelines. I will participate in your life to a fault and encourage you to go far, hoping that the freedom I give will substitute for the downfalls I can’t control. Reality is that a lot of my decisions will be navigated with a veil of hope covering my fear that you will leave me. I need you to understand this so you can stop me from pushing myself so hard, so you can tell me that you don’t need or want me to be anything more than I am.
All of this and more will overwhelm you. I will watch your poker face evolve over the years as you hide how hard it is to be in your shoes. I’ll see through it every time. I’ll know.
And I’ll wish I could take everything back: my needs, my desires, my sickness, and the fact that I am in love with you. I will feel I am ruining your life. I will feel I am burdening you with more than you can handle. Don’t let me. Please, tell me how much of a burden I am not. I will need your help reminding me that relationships aren’t about who gives more, but about why and how we give to each other.
Dear future partner,
The reason my disease is good for us is that it will enable us to have a deeper relationship. We will have to communicate better to keep our relationship strong – because of me. I’ll take credit for our need to be relationship perfectionists; I need to be able to take credit for something.
If you become my forever partner, it means I have no doubt whatsoever in your love for me. It means I can be all the parts of me with you all the time – the good, sad, goofy, angry, and painful parts – all of them. It means I have realized I am worthy of the fullness of life-giving love that makes a relationship whole.
Those of us who struggle the most know how much there is to lose, so we do a good job of holding on to what we have. We make the best partners, if only for that reason. When I allow myself to fall in love with you, I will be facing my biggest fear that you’ll get tired of taking care of me and realize you could have a better, more active, more fulfilling life without me. I only hope I am able to show you how much I love and appreciate you so you won’t forget how little I take you for granted.
Dearest future love of mine, don’t leave before we even begin. I have great things to offer despite this disease that tries to take my identity away, this disease that tries so hard to come between us. Help me defeat at least a small part of my handicap – my fear – by proving love can exist and survive beyond all that threatens to undo us. Find me, love me, be with me – until death parts us.
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21 thoughts on “A Marriage of Sickness and Health”
Reblogged this on The Mind of Jed.
I cried the entire time I read your post because it hit so close to home. I am happily married (2 years now) and have been with my husband for over 13 years. I found an amazing, caring, devoted man and yet I still worry. Worry one day he just won’t be able to handle it anymore. Worry that I have stuck that smile on my face throughout the pain for so long now that when I really truly need his help he’ll wonder if I really do. Worry that I won’t be able to care properly for the child I am now carrying and this will be too largr of a burden for him. But throughout these worries, I try to remember that he is my rock, my support, my everything and that without him i wouldn’t be able to function as well as I do with my disease(AS). I remember that he has told me many times that he is there for me no matter what, sometimes he just needs a gentle reminder of just how much pain I really am feeling. I am thankfully one of the lucky ones and I only pray that I will always remain one. What may have helped is that he has accepted me from the beginning with my illness; it was a package deal and he has made efforts to better understand it, like attend the forum on arthritis this weekend with me. I am thankful for him every day and I encourage you not to lose hope. There are wonderful, caring people out there, you just have to be patient, honest and upfront!
Thank you missriley24, I am so glad you have what sounds like an amazing husband. My hope for all of us that we can find and maintain amazing relationships that far exceed anything we could ever imagine. ❤
I stumbled across your story on the Mighty.com website. I have to say I was also in tears reading this particular blog. Totally hit home! my husband of 13+ years has Crohn’s disease plus multiple other debilitating health issues. They plague him and our family every single day! This particular article put so much into perspective. As being the healthy spouse, I could only imagine how lonely it has to be to go through so much of the physical & mental despair being the ill person. It is lonely at times being married to someone chronically ill (as I know so well). I will never ever leave him no matter how bad or hard it gets. I put myself into his shoes every single day mentally and think how much worse it is for him. This article struck such a chord in my heart! ever since I saw your post on The Mighty I’ve been reading your various blogs. I’m so sorry you are also chronically ill. You show tremendous strength not only being an advocate for AS but also how you handle it so well. You are helping so many others out there in so many ways. I think that alone needs to be recognized! God bless you and I can only continue to hope and pray for cures to all these horrific, unfair, nasty diseases. Keep staying STRONG ❤ god bless you
Thank you for commenting and for sharing pieces of your stort and journey. I’m so sorry we have these battles to fight. I commend your beautiful relationship! We know more than many how much hard work it takes to maintain a relationship with “extra” struggles. Keep loving!
Loved the article. I’m unfortunately one of those till disability do we part… after 17 years, 3 children and watching/helping him climb the corporate ladder- I’ve become too much of a burden (his words)… he doesn’t think he owes me any support even though over half of my spine has already fused and all that goes along with this hell of AS… I can’t imagine ever trusting anyone else…
I’m so sorry, Carol. I hope you have friends and family who support you.
Marriage is about two people, two sets of needs and weaknesses, and a relationship where each partner is supported and nurtured. This is written by a person who has never been in love, and has a very young perspective on marriage. Your marriage will not just be about you. Your idealism is beautiful, but marriage is so much more than the picture you’ve offered here. And in time you will have more empathy for the ones in other marriages who left their partners. Empathy and compassion grows out of failure and experience. You can’t begin to imagine how complex their position and relationship is.
First of all, thanks for sharing such a courageous comment. I hope you’ll understand it took a lot of courage for me to share this post for you to so tenderly read and respond to, understandably from your own lens through which you see life. I will say that this post I shared is based on my own years of experience in love, loss, grief, and growth.
I don’t know anything about you, and you don’t know much about me. I do not need to prove to you that I know anything at all, and I don’t expect you to prove anything at all to me.
All I ask is that you listen with an open mind.
I do not need to prove to you the experiences I’ve had related to relationships and marriage. I know what they are, and they shape my outlook as these same experiences have shaped yours.
I would love to listen to your experiences, as there is always more than meets the eye. I just ask that you listen with an open mind.
I do not need to prove to you how much life experience I’ve had that has brought me to today.
I do not need to prove anything at all, especially when my own story, my own experiences don’t have enough validity for you to believe I am worthy of sharing them. That tells me my experiences aren’t valid, along with all those (of all ages, diseases and healths, and experiences) with whom this post has resonated on a deep level.
I absolutely agree with you that partnerships require the support and nurturing of both partners. If you reread what I wrote, perhaps you’ll see the sentence where I spoke of the fact that it’s not about who gives more, but about how and why those gifts are given. The how and why is through love, which is a powerful feeling, as you have hinted that you understand.
I encourage you to listen to those you know nothing about, else you run the risk of silencing voices that need to be heard.
Stories are so powerful, I’d love to hear yours.
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i am sitting here crying over your post. i too was married for 20 years to the love of my life, and he walked out because of my disability. thank you for being my voice! barbara
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Barbara, I’m so sorry.
What a wonderful piece. It deserves wide circulation, especially amongst caregivers.
As you probably know, my Shelley dies with Alzheimer’s. Her rare voice echoes in my mind. After she was essentially without words, she once said, “You are exhausted, aren’t you?” I was, but not nearly so completely as she. It took a village to see us through.
May your village guide you even better.
Thanks for sharing such a raw, vulnerable reminder that our relationships we choose to maintain out of such powerful love remain with us always.
And I agree, it takes a village. Absolutely.
Reblogged this on crisgrey117.
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That person is out there I promise. Please don’t let anything or anyone hold you back from your dreams. You can do all the things you dream of even with AS. It’s about learning when to take a break, how to best treat your body and not being afraid. Fear can hold us back. Being independent is what helps you be strong. Don’t hide wear your AS proud. I used to hide but once I was open the support I have received from people at work is amazing. A lot in life is about honesty, being honest with yourself and accepting but not let AS define you. Let yourself have a bad day then start over again over and over again. You can do it and you will find the right partner for you. Your words are golden and help me put my AS in perspective every time I read your blog. I believe in you although I do not know you.
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Thank you so much. I wrote this less about me and more about those whose lives are filled with fear. I wanted to put the tender fear alongside powerful hope, and try to display a reality of the emotions that many of us with chronic diseases feel.
There are so many scenarios with relationships, especially those in which one partner is sick.
1) Two healthy people get married. One gets sick.
2) A healthy person and a person with a disability get married. The partner with the disability has always had it, so s/he has lived a life of adaptation without knowing what it would be not to adapt.
3) A healthy person and a person with a disability or sickness get married. The partner who is sick or disabled was only recently diagnosed, or diagnosed as an adult, and thus has live on both sides of the fence. They generally have more feelings of loss, because they remember their pre-diagnosis days.
Complicated! And trust me – I do believe in the power of love, when it is right, to get two people through every obstacle there is, although I acknowledge it doesn’t always work that way.
Hope – hope is what gets us past our fear!
You are a powerful voice and you are likely to survive because you have the clarity of understanding who you are. As an AS survivor of 50+ years, the most important thing is to know that your life must be about you. After all, it is your breath for as long as it lasts.
Pain and suffering is our journey but that alone does not make us special. We are disabled but we are not… in our head and heart. To me it is too much to ask or expect any partner to understand. If so that would be amazing.
So my relationships have failed but it was not about the disease. It was not about fault or blame. It was simply a loss of vision about sharing a common future. Without vision you must give it up.
So you will survive because you know what you want. Life is about pursuing that dream. And failure does not mean that we give it up. It is our journey and our destiny to continue.
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Thank you. Survival is indeed important, as well as pushing for more that just survival – for Life!
I agree that having a healthy dose of non-damaging selfishness is important. I think it is important for all partners in a relationship to have appropriate levels of selfishness – not cruel or abandoning or hoarding, but an awareness that one needs to take time or energy for herself in order to recharge and be able to give wholly to the relationship. We can’t give all of ourselves to another person if we cannot take the time every now and then to remind us what makes us wholly us. And I believe it is important for each person to encourage their partners to be selfish.
I hope that made sense!
You will find that one. And they’ll be amazing just like you. I can’t promise it’s going to be your first marriage. I, myself, am on my 2nd. But you’ll find THE ONE. You’re too much of a bad ass to not get scooped up. And they literally may need to scoop you up, but they’ll do it, because they love you.
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Thank you Melody, I do have hope that I will find the right partner. I do believe there is one (or more) out there for everyone.
And I sure hope they scoop me up, because I’ll scoop them up when I can…:)