My Honest Answer to 'Yes, But What Do You Do?' After Becoming Ill

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In my water exercise class, I am 10-20-30 years younger than the others. And most of them don’t use a cane or walking stick like I do. Getting out of the whirlpool a few weeks ago, I heard behind me, “What’s the matter with her?” The response: “Oh, she’s got a lot of problems, all in her back and more.” Then the first one again: “Mm-mm-mm, least I was old when I got my problems.”

Add to that most of them look at me and think I’m in my 30s when I’m actually a few months shy of 50.

I hate meeting new or newish people, those who don’t know I have ankylosing spondylitis and fibromyalgia, who haven’t seen the walking stick or my few blog posts, or who last heard I was tenure track and writing and and and and and. It’s not the first but the second or third, “Yes, but what do you do?” that makes me ready to go home. It’s too much to explain:

I hurt too badly to think the way working/non-chronically ill people do without effort.

I hurt too badly to even imagine thinking my way through the simplest problem or an interaction that goes on long enough for one of my pain centers, or three, to go off like fireworks.

I have to sit down. Now I have to stand up. Now I need to sit. Now I need to lie down. Where’s the bathroom? Are there stairs? How many? How long is the drive? When can I get back home to put on my pajamas and play mental games to feel like a human and not a raw nerve wrapped in deteriorating joints and inflamed tendons and muscle spasms that have, and will again, soon I’m sure, make me cry?

I have so little of the life I used to have, that I wanted, that I actually needed and worked so hard for. My degrees. My profession. My writing. My colleagues and friends.

Even I hate that. It’s not embarrassment. It’s disgust. But if I walked around fully and flamingly disgusted with myself all the time, I wouldn’t be walking around at all.

So what do I do?

I rest. Which doesn’t ease the fatigue but lets me get through a day without crying, screaming at people I love, or being too weak to move my arms.

I do laundry. All week. I can sort laundry or load the washer or load the dryer or empty the dryer or fold or put folded items away. If I do two of these things in the same day, I need a one-to-five-hour break in between.

I walk my dog. Infrequently and not very well or far and with a walking stick. And moderate to severe pain.

I make simple meals, one a day or every two to three days. In between I snack, eat takeout or just go hungry because I am too f*cking tired to cook and then chew the food.

I take vitamins, supplements, a DMARD and an injectable biologic. The last two aggravate my fatigue. That’s it so far. An antidepressant to sleep more than a couple hours and not spend my hours crying over pain, isolation, the well-meaning but skin-tearing questions, doubts, bad advice and me-too-isms of those who do not understand, or see any need to understand, chronic pain or illnesses.

I cling to my smartphone — Facebook, friends, family, email, texting, Amazon because it is easier to have the postal worker or delivery person carry it up the stairs to my door.

When I can, I read until I can no longer concentrate because of the pain itself and/or shifting positions every few minutes because of pain. I used to read 1,000+ pages a week. Now? Maybe 40. Seventy-five on a really good week.

Then I get up the next day and do it again.

That is what I “do.”

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To My Future Partner, Who I Hope Won't Leave Me Because of My Disease

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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, ankylosing spondylitis, 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. Evidence shows that it is harder to maintain a relationship when one of us is sick with a lifelong disease or disability.

There is also evidence of miraculous love stories of two people overcoming impossible obstacles to be together. These stories deserve every praise that exists — but they 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 five, 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 nine 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. The 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 force us to have a deeper relationship. We will have to communicate better to keep our relationship healthy — 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.

Follow this journey on Being Charis.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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Why the 'Dehumanizing' Process of Applying for Disability Benefits Won't Stop Me

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Applying for disability has been a demeaning, humiliating, invasive process for me.

I’ve heard it could take as little as three months to be awarded federal disability benefits, but I would probably have to be literally dying. I’ve heard it’s possible it could take three months to a year. “It’s possible” in the world of bureaucracy is nothing to lean on. Many people trudge through two to five years of endless forms, initial decisions, appeals, reconsiderations and hearings before becoming card-carrying members of the unofficial federal disability club – if they’re successful.

In kind terms, the Social Security Administration (SSA) drags its feet more for those who are younger, more educated and healthier-looking. The SSA is less likely to award disability to those who have worked recently or, ironically, to those who have worked fewer years. Additionally, the lesser known or more abstract the disability as well as the more physical (as opposed to mental), the less willing the SSA is to acknowledge a disability. These are facts I have been told by staff at my attorney’s office, and all but one of them apply to my case.

Charis wearing a t-shirt with hand-stitched lettering that says "disability."
“I made this shirt.” Image by Rich Beckermeyer; Makeup by Alex Cassie
As if I hadn’t already made the most difficult decision of my life to accept my inability to work, applying for disability takes it one step further, forcing me to accept every single thing I can no longer do, even those I am not ready to accept. I still have dreams of being healthy, so please don’t take what’s left away from me too.

My reality has been muted by the towering, sound-proof piles of paperwork that sprout legs and chase me while I toss and turn at night. I have to prove to the Social Security Administration that I am unable to work, but also that I can no longer function independently. I have to prove I no longer have a life despite all I have done to maintain a semblance of living. I feel I am on the middle school debate team and I’ve been assigned the side I don’t agree with; in order to win I have to admit that I am incapable of the freedoms I embraced in the past. I have to do more than just admit them – I have to fully believe my inabilities enough to prove them true to strangers. I have to believe I’m less than I ever imagined I would be so others will believe me, too.

The piles of paperwork litter my kitchen table as I struggle to answer questions about my (in)ability to interact with people, go outside, take care of my health and accomplish chores.

I feel I am exaggerating when I say I cannot clean my home, even though as I write the answer I can see the piles of dirty dishes in my sink, smell the trash and feel the gritty bits of dirt and detritus gathering on my floor.

I feel I am exaggerating when I say I used to cook but can’t anymore, simply because I still want to cook. As I write the answer I look at the recycling bin full of receptacles for microwave meals. I open my fridge and see the empty drawers that were once overflowing with fresh vegetables to cook. I finally gave up on buying them; weeks would pass as they shriveled and I ate microwave-heated, sodium-rich soy gravy nuggets.

I still dream of from-scratch meals and crave the crunch of a perfectly cooked stem of fresh broccoli, yet I archive these thoughts as I tell the Social Security Administration I can no longer do these things.

Saying I can’t work is easy. I understand now that I can’t. It’s the other parts of the disability process I struggle with. Home life. My personal activities. Big Brother has his magnifying glass held aloft to observe every move I make – to see if, as a beautiful, healthy-appearing 29-year-old, I really do have trouble lowering myself to the toilet many mornings. To see if my friends really help wash my dishes. To see if I can ride my bike a mile across town and use the evidence to claim I have no physical problems. To see me interact for two minutes with a stranger without having a panic attack and use it to claim I have no mental trauma. To watch me sleep, to see if I have insomnia and nightmares. Come on over, Big Brother, the sheets won’t be clean.

I know I am disabled and cannot work, but I haven’t given up hope for the other parts of my life. I haven’t forgotten what it’s like to cry while cutting onions. I haven’t forgotten the warmth of the dishwater as I scrub away a meal that I made from scratch. I haven’t forgotten coming home to pleasant smells and a clean floor. I haven’t forgotten the joy of spending an evening out with friends, or a day trip to the ocean. I haven’t forgotten the freedom and power of running several miles. I haven’t forgotten, and that is what keeps me from accepting the losses I never imagined were possible.

I remember how whole I felt before, and now I am left with broken pieces – pieces I hold onto so dearly, like broken pottery.

I have learned, by looking at myself through the eyes of the Social Security Administration, that I am nothing more than my disease – yet I am simultaneously defined by everything I have lost.

Time and time again, I am painfully reminded that having a life outside my disability is simply unacceptable – if I am disabled, it must be my only identity. Every moment I must be available to stand naked in front of Big Brother’s magnifying glass for an invasive, full-body review before the conveyor belt jolts me to the next box to check on a government form.

If I need disability benefits, I had better be able to prove I am worthy of occupying the lowest rung of the ladder in a bureaucratic nation which, by the way, means I work harder than the rest just to keep from falling.

But I won’t give up. While this process is taking everything I have, I will not give up. Because people with disabilities don’t give up. We don’t have the option.

Follow this journey on Being Charis.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the First Doctor Who Invalidated My Pain

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I met you when I was 20 years old. Scared, worried, and in the worst pain I had ever experienced, I held the tiny seed of hope that doctors would be able to help my pain become past tense. You were just a first-year resident on your rheumatology rotation at the University of Michigan hospital, responsible for doing my initial examination before the real rheumatologist came in. I don’t know anything about your life, your own experiences with physical pain, or the training you received before you treated me. All I have to judge you by is that visit and how you treated me. 

When you came into the exam room you quickly told me that all my blood work had come back normal, with no signs of inflammation. My experience since meeting you has taught me that when medical tests do not readily reveal the source of pain, some doctors can be apt to judge one’s pain as psychosomatic. But I didn’t know that then. I just thought doctors were supposed to help.

You didn’t listen when I shared how much pain I was in and what exactly hurt. You just pressed on various points on my body, asking if they were tender and said you felt I probably had fibromyalgia. You didn’t hear that I was not in muscle pain and that none of the “tender points” felt tender. I can’t say what you saw when you looked at me, but it certainly felt like you didn’t see me. I don’t think you saw the otherwise extremely healthy 20-year-old college junior who up until a few weeks beforehand had spent most of her free time rock climbing, running and playing soccer. I can’t say I know what you were thinking about me, but your curtness made me feel like nothing more than an inconvenience. 

But I’m a fighter with a researcher’s heart and mind. I had already read countless articles in the weeks I had been sick, searching for answers to my joint pain. I knew fibromyalgia wasn’t it. And I knew you weren’t really listening to me. 

But now, seven years later, I want to thank you. Yes, thank you. Your invalidation of my pain helped me begin validating myself. To get help, I had to trust my intuition. I had to trust my inner knowledge that something was profoundly wrong in my body, even when you didn’t fully believe me. Your trivialization of my pain set me on a trajectory of learning how to honor my body and all the emotions that surround being sick. Your invalidation taught me that minimizing my pain is not OK. And for that, I am forever grateful. 

Sincerely,

Katie Jo Ramsey

P.S. I have ankylosing spondylitis, a disease which often shows up as normal on blood tests. Arthritis Research UK estimates that only 30 to 40 percent of people with ankylosing spondylitis have inflammation that can be picked up in a blood test, making it all the more important for patients like me to trust their symptoms and fight to be heard.

Follow this journey on Anchor for the Soul.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When a Nurse Rescued Me After I Almost Gave Up on Life With Autoimmune Disease

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I remember precisely the moment I gave up. As if the enormous weight became too heavy to bear.

I had begun to have the strangest pain in some of my joints. And fevers. And infection after infection… with no answers. I was a stay-at-home mom of four children (the hardest job I’ve ever had). I could do it all, at one time in life. I went from doctor to doctor and they ran test after test, with no answers. There were ugly comments,  judgments and so much hurt during that time. Still, no answer.

Until I got one.

Ankylosing spondylitis (AS). I’d never heard of it. Maybe you haven’t, either. It is an autoimmune disease that affects the spine, joints, and in some cases, organs. I read all I could about the disease. And I knew I could not do it. I wasn’t strong enough. I could not do it to my children. My husband. I chose to attempt to take my own life. I failed at it.

I spent some time at a mental inpatient program and met a nurse who took time to sit with me and talk about it. He said, “Guess what? This sucks. Life is hard. Look at what you can do if you stick around and continue to fight for those who can’t do it on their own. Your children. The animals that depend on you. Your influence is needed. It’s going to suck. You’re going to be miserable. But, you can do this. Make a change.”

a woman lying on a pillow with a dog next to her
Angila and her dog.

After years of rescuing and advocacy, someone rescued me. Advocated for me. I decided to fight that day. I decided to be brave. Not because life would get better for me. But because it would get worse, and I needed to be OK to fight — to fight for myself, to fight for those with no voice.

I will never run again, as there is no cure for AS, and I’m not a candidate for treatment, due to high infection risk and my immune system. But I’ll be here. I choose to be. I choose to fight. And I choose to be brave. I was rescued that day, so that I can set an example, and continue to help others.

So tomorrow, I’ll fight more. And I’ll wear blue to support the other AS warriors. I’ll find beauty in life, and in myself.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I Really Mean When I Say 'I'm Fine' as Someone With Chronic Illness

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Living with chronic illness and pain is something that isn’t easily understood by people who are not going through the same thing. Moreover, the effects of illness are an emotional and personal daily battle.

Many people have this notion that if you look fine, you are feeling good or having a good health day. Many also don’t realize that even when we say we are fine, we really are not. At times when I say I am OK, I really wish I could share with people who don’t understand my ordeal and how chronic illness and pain truly affect my life.

Every now and then, when I say I am OK or I am fine, I really mean to say:

“I hurt more than I can effectively express.” The physical part is often easier than the emotional part. I have people in my life who don’t believe the extent of my sickness and pain, so I keep how I am actually feeling to myself and experience has given me many reasons to do so. I have had people I once called friends and loved ones who have walked away because I believe my being sick was too inconvenient for them. While I have learned that their actions had more to do with them than anything I did, it still saddens me because I would have been there for them.

I don’t have a lot of emotional support so I seek help in therapy and I look for solace in prayer and in the things and the people that I love. These things have allowed me to a stronger person — both in conviction and in the ability to see past my limitations. So, yes I hurt both physically and emotionally but I have found strength I never thought I had.

“I am scared.” I have read up on about rheumatoid arthritis (RA) and fibromyalgia. I know there is no cure for either and I don’t see remission in my future. I also know I will never return to perfect health. I worry about what the future holds and where I will be in 10 years or 20 years. I am only 40 so I have a long life with RA and fibromyalgia. I worry about how I will take care of myself if things get worse and who will take care of my kids. I have valid questions, but I know that these questions don’t have concrete answers.

Taking life one day at a time is all I can do and that is scary in and of itself. I will never be my former self, but I am working on maintaining some level of peace when it comes to my health. While I am scared, I try to focus on the here and now so that I can make the best of my life with chronic illness.

“Life is just not fair.” I am not always able to make plans because I don’t know if I will be able to follow through. I don’t know what the future holds because I have to take life as it comes. I can only be hopeful, and I am. Chronic illness has taken a lot from me, but I have taken a lot back.

No one said life was fair but it is worth living. While I truly believe that, I just sometimes want to vent and say that life just isn’t fair.

“It is not my fault.” Being sick is not my fault, but sometimes I feel like it is. I worked hard at every aspect of my personal life and professional life before illness and even harder after illness. I am a good parent and my kids are turning out just fine, but sometimes I feel guilty they can’t have the parent that I wish they had. I was a faithful and loving spouse but my spouse wasn’t. As a result, my marriage ended and while I know that had nothing to do with chronic illness, it happened after I was diagnosed, and sometimes it makes me second-guess myself. I have been a successful employee and I have been a great volunteer in the community. I am a patient advocate and I am good at what I do. I have accomplished so many things despite and with chronic illness.

What went wrong — my getting sick — that wasn’t my fault and the bad things that happened after weren’t my fault, either. All the good things were due to my hard work. Nonetheless, if I could have protected my health, I would have done everything in my power to make sure I stayed healthy, but I couldn’t. Further, I had no control of the awful things that happened afterwards. That just goes back to life simply not always being fair. So, I didn’t mean to get sick — I really didn’t — that’s all.

Right now, I am feeling better than I have been in a long time – both physically and emotionally. Sometimes, I actually feel fine when I say I am and other times, I am not fine at all. When I am not feeling well, I have things to say. Yet, it is not always easy to say them.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*

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