woman rinsing her hair in the shower

A Love Letter to Anyone Who Struggled to Shower Today

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This is a love letter to all those for whom showering is repeatedly a laborious exercise, physically, emotionally or both.

To those who spend days putting it off because you know just how exhausting or painful it feels, right down to your bones, just to stand under the water for that long.

Those who do not feel refreshed upon stepping out of the steam, but rather feel like they’ve run a long, arduous race, only there’s nobody there to greet you at the finish line with your medal, because damnit, there is no finish line.

This is your medal.

This is your letter of achievement or recognition or love.

 

This is for each of you who has to sit or lie down for the next hour or more with your wet hair in a towel, because there’s no energy left for hair drying or body moisturizing or even putting on clothes.

To every person who week after week feels like crying when lather-rinse-repeating, and then one day it feels even tougher, more exhausting, more acutely painful, more, just more, and you stand hoping nobody can hear your deep body howls as you cry out in agony under the water before you’ve finished washing all the shampoo from your hair.

This is to the one who is forcing yourself through it, because you know you must leave your house tomorrow, and you know that as hard as it is now, showering and going out just would not be possible in one day.

And this is for the one who, despite wanting and needing and longing to be clean, cannot bring yourself to shower, physically, emotionally or both.

This is a love letter for everyone who lives day in day out, chronically, with illness of any kind, for whom seemingly simple tasks that most take for granted, like showering, feel like mountain climbs.

And to those climbing these mountains, and to all those who simply cannot make the climb today, this is for you.

I see you.

I’m with you.

I’m one of you.

Thank you for breathing and continuing to breathe.

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Thank you for existing.

Thank you.

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Thinkstock photo via Photodisc.

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To Those Who Think Illness Makes Them 'a Drag' on Their Partner

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Back in college, I dated the wrong boy for far too long. He seemed to feed off of every insecurity I had, and even gave me some new ones. While I’ve mostly overcome all that and rarely give him a second thought, there’s one thing he said that has stuck with me all this time. One thing that has become my greatest fear, my greatest insecurity.

You’re such a drag, always sick all the time.” 

As a (then) English major and (later) English teacher, I focused in on that
language. He didn’t say it’s such a drag that I’m sick all the time. He specifically put the negative, the blame, the drag on me. As if I could help it. I wasn’t deserving of patience or sympathy because I was struggling; I was made to feel worse because it was bringing him down. was the problem. And that was before I’d even developed the chronic illnesses I now have. Eventually, I realized he was not good for me (for at least 100 other reasons), and got rid of that boyfriend…but his words remained buried deep within.

 

Once I’d gotten rid of him, I renewed a friendship with an old boyfriend who would eventually become my husband. My kind, caring, supportive husband. He’d been a friend since childhood, and seen me through the highs and lows of all aspects of life…so I always knew I could count on him to be there when I needed. Still, when I started to get really sick, my ex’s words haunted me again.

My insecurities came flooding back, made worse by the fact that I didn’t have a diagnosis; in fact, I couldn’t even get a doctor to take me seriously for years. I just felt worse and worse, with pain, fatigue and weakness that forced me to cancel plans and miss experiences, and no real explanation. Surely my husband must think I’m a drag.

As these symptoms continued, I just didn’t feel like myself anymore, and it showed. I wasn’t the vibrant, bubbly, perky person I’d always been, because I was too weak or in too much pain. Surely my friends must think I’m a drag.

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Since I could never control when my symptoms flared and when they were bearable, I had to stay home on several holidays and special occasions…and sometimes my husband stayed home to take care of me. Surely our families must think I’m a drag.

I had to take so many sick days, and often scheduled medical appointments during my lunch hour instead of eating in the break room with everyone else. Surely my coworkers must think I’m a drag.

As time went on and my symptoms got worse, I was eventually diagnosed with fibromyalgia and sarcoidosis – neither of which has a cure. I realized my life would never be the same – I would never be the same. As I thought about all the things I could no longer do, the places I could no longer go, the adventures I could no longer have, my ex-boyfriend’s words filled me with more sorrow than the illness itself.  Surely my husband must think I’m a drag.

Now the reality is that was all in my head, not theirs. Don’t get me wrong – I’m sure my husband, friends, family and coworkers were at times frustrated or saddened when I wasn’t able to be there for the big events. They may have even thought it was “a drag” when I couldn’t do the little ones. But that word choice is important. They were (and will continue to be) disappointed in the situation – the fact that I have to miss things because of my illnesses – and not in me as a person/friend/relative. They don’t blame me for being sick.

In all honesty, there have been people who didn’t believe my illness was real, who thought I was exaggerating, making excuses or just looking for attention. There are people who have faded out of my life because they could not – or would not – adapt (see my recent article, When Your Medical Life Replaces Your Social Life). But what’s important to keep in mind is the quality of these relationships. I may have fewer people in my life now, but the ones who remain truly care about me. They may not fully understand my illnesses (most doctors don’t even fully understand), but they support me and understand that when I cannot be there, it is not because I am a flake.

quote that says 'In the end, you'll realize you only have a few true friends. But that's better than having many fake ones.'

Finding love and maintaining a relationship can be difficult for anyone, and adding a chronic illness into the mix does indeed add more challenges…but that doesn’t mean it’s not possible. When it’s the right person (and the right person is out there), s/he will not only understand and empathize with your situation, but will support and advocate for you, too. So here’s my advice for those who think that illness will prevent them from finding true love:

1. Get out of your own head.

We are always our own worst critics, and may fear that everyone else is thinking the same thing. If you keep telling yourself you’re not worthy of a real relationship, then you’re not giving people a chance to enjoy the wonderful person you really are.

2. Be honest, and early.

That’s not to say your introduction should be “Hi, I’m so-and-so, I have X, Y and Z illnesses, nice to meet you.” But you’ll want to let a potential mate know you have a condition that has a profound impact on your life. If the person is right for you, s/he will want to learn more as a natural part of getting to know you. If not, it is better for you to find that out as soon as possible.

It’s also important to be honest (with yourself) about your own limitations. Don’t try to do all the things a healthy person could – even if you can force yourself to get through an active evening, you’ll be struggling too much to enjoy the company, and feel even worse afterwards. Instead, plan dates that are less physically demanding but allow you to get to know each other, like a dinner show, a comedy club or a paint night for couples. If you’re flaring, it’s OK to reschedule…or stay in, and let your date bring over take-out and watch something on Netflix. Remember, it’s not about the things you do (or don’t do); it’s about the person you do them with.

3. Focus on friendship.

I truly believe the strongest relationships are those that are grounded in friendship. One of the most important things we need to get through life while sick (aside from health care) is a sense of humor…so look to those who make you laugh when all you want to do is cry…and cry with you until you both start laughing.

4. Don’t discount another sick person!

In the chronic illness community, we tend to form close bonds with people in online (or in-person) support groups – they are the ones who truly “get” what we are going through, and can often be more sympathetic to our experience. These are the people we turn to when we have exciting news, when we’re scared, when we’re angry, relieved or upset. We literally go to them in good times and in bad, in sickness and in health…and isn’t that just what we want out of a quality relationship? Now I’m not suggesting we turn support groups into matchmaking sites; I’m just saying…you never know.

5. Be patient.

We need our potential mates to be patient with us, to understand that it may take us longer to do things, or that we may not be able to do some things we could do just a little while ago. But we’ve got to be patient with them, too. We’ve been living with these illnesses for a long time, and we’ve learned to make adjustments to accommodate our needs. We can’t expect someone new to automatically understand it all and adapt perfectly. There will be mistakes, misunderstandings and disappointments (on both sides). We’ve got to be patient with them – teach them about the ways our illnesses affect us, and guide them towards more information. Even my husband, who is absolutely my greatest supporter in every way, took a little time to fully come around. He didn’t realize how profoundly I was affected – partly because I was still trying to put on a brave face. Once I allowed myself to be that vulnerable and gave him the time to let that sink in, he became even more supportive than I ever could have imagined.

kerry's husband signing an advocacy board to support her
My super-supportive spouse at our last advocacy summit

This post originally appeared on Float Like a Buttahfly.

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My Decision to Start Using a Cane in Public

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“A crutch is a funny story; a cane is a sad story.” – George Costanza

I was going through a hat store one day when I saw them…a collection of stylish canes. I zeroed in on one with the brass head of a horse. For 14 years I’ve held off on carrying one. But standing has become pure hell. I plan each moment of my day not to stand. I strategize about my trips to the bathroom at work —what times and routes will get me there without stopping for conversation? But I’m often stopped. Then it’s just like in the movies when you have the point of view of a distressed person who is looking right at someone jabbering on but the cognitive dissonance distorts and drowns out the voice. Like the static on the radio that rises to a screech. I just want to get away from people and sit down. And I like people. Mostly.

 

So I finally bought the cane. I sometimes take it out of my car and into work. But I use it sparingly. I don’t want to be an object of pity or look “weak.” Doesn’t jive with my talk about camping and biking and working out – the absolute joys and salvations of my life – as I’m afraid people will think I’m faking.

Compared to his cousin, the crutch, a cane connotes permanence. A crutch is often a header into the bushes and a cast for six weeks. People sign your cast. They don’t sign your cane – many give you a look of pity. The next step, you see, is a four-pronged cane, then a walker with wheels, then a walker with tennis balls on the legs, then a wheelchair, and before you know it, someone’s pushing it for you. Yes, I’m 50-something. Yes, everybody has “something.” But do I actually need to look like it, or look even older? Many of the volunteers where I work are 20, even 30 years older than me – do I need them looking at me with pity? Does it help or hurt me to provide a visual of the depth of the pain I feel every moment, the pain that is otherwise hidden as I smile and carry myself like a healthy, fit person?

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So far I’ve found that using it sparingly, even just carrying it with me into work, has had mostly good results. When I think I’ll get stuck standing I take it with me; if I don’t need it, I set it aside. It signals my disability, but perhaps it also enhances my work and achievements – people now see what I overcome to show up and be effective.

When we talk of propping ourselves up emotionally, we speak of a “crutch,” not a “cane.” Why? For most of us with chronic pain and related depression, our accommodations are there for the long-term – probably for the rest of our lives. And I have other canes, and just like my stylish new one, I don’t use them enough because of my fear of pity. They are time off, working from home, working shorter hours, having a heating pad in my office and a yoga mat to lie down on. Using ice. Going to the gym at lunch. Sleeping later. Making all plans on contingency. Time alone. Doing less. All “canes.” I need them and will always need them. And perhaps they gently remind others that I have a chink in my armor – not in my character. That I am not ashamed of it, that I didn’t ask for it, that in spite of my “canes,” I’ve achieved and sometimes thrived and will continue to do so.

So while I’d rather be a funny story than a sad one, I need a cane. And maybe my willingness to be vulnerable, to use my cane, will not only relieve my struggling but engage those around me in my care.

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Thinkstock photo via Creatas Images.

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My Full-Time Job Is Being a Chronic Migraineur

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My job doesn’t pay…in fact, my husband and I spend thousands upon thousands of dollars on “my job” every year – lost work as an RN, procedures, therapies and treatments not covered by insurance, new supplements well-meaning people swear by, expensive devices and treatments that might help.

I work every hour, every minute, to beyond exhaustion. There is no coffee break, no downtime, no weekends, no vacation. No time off despite excellent behavior. And yet – my job doesn’t look like a job to most people. Everyone who sees me thinks I’m a-OK as I pretend to be “normal.” I even spend energy faking it for my family. They have no idea how hard I work to appear better than awful. And I want so much to be normal. I dream of waking up one day – and all of this struggling will just *poof* be over.

 

If you’ve ever experienced pain so severe and for so long that you’ve prayed you’d die, you know what I’m talking about.

It’s been a 10-year string for me. And despite how I focus all my energy on being well, the physical abuse and mental stress I inflict on my body while trying to “appear well” has definitely been part of the cause for adding more comorbid diseases. Hooray. It’s like I got a “raise” or “promotion” with my job!

Normals often don’t know what to do with chronics. They don’t get it – unless they get it. We may appear to be lazy, whiny, unreliable, boring, insincere, anxious complainers. I’ll freely admit my former self didn’t understand.

There’s no kicking chronic migraine, rheumatoid arthritis, etc. and booting them our of your life. There’s no beating them. No remission. No cure.

So…we may come across as 1) boring, 2) annoying and 3) weird.

I think the only way to explain chronic illness to an average person is in analogies… Imagine having the flu every day of your life. Go to bed with the flu, wake up with the flu…sometimes it’s only aches and pains and a runny nose, other days it’s all flu. Then imagine having to climb Mt. Everest with that flu. Every day. Mt. Everest represents taking a shower, making a dinner for your kids, cleaning a bathroom, doing wash loads, driving to a doctor appointment (where they give you the news that they can manage your illness, but there is no cure. And the meds they want you to take may bring on side effects that are worse than the illnesses themselves).

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woman lying in bed holding her head with a migraine

It’s like I’m half-alive, living a half-life. I feel like a lump. A burden. A shadow of my former self, a shadow of a mother, a shadow of a wife, a shadow of a friend. Yeah, staying home is great fun…staying home, being disabled – it’s the “job” I’ve always dreamed of having.

I’m good at my job. I’m great at my job. But I hate my job. I hate how it affects our family. How it takes things from us every day with no shame or remorse.

Sometimes…sometimes, I am so done. I want to quit my job.

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Finding the Meaning of 'in Sickness and in Health' Through Both of Our Illnesses

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Those vows are something that most of us just say on our wedding day, but never really think anymore about. Well, I certainly didn’t. Even though my husband had been finally diagnosed with bipolar disorder, just three weeks before our wedding, three years ago. We’d been together for seven years at that stage, but probably dealing with his mental health for the previous two years. I thought he’d finally get the right treatment and we’d be getting on with our life.

At that point my health hadn’t been wonderful, but it was nothing that couldn’t be dealt with and I would be OK again. So we started on our mental health journey. I mean we were lucky, we had lots of support which would help us to learn to live with bipolar disorder and its effects. We would master this and move on. I thought it would be that easy!

Lewis has bipolar disorder type 2, so he doesn’t get the extreme highs. But he does get the lows… I won’t lie, there have been times over the last three years when I have thought I couldn’t do this. It’s too hard. But I had to take a step back from my feelings. I had to remember he is still him, that he is still the wonderful caring man I married and an even better father.

It was, for the first year or so after our marriage, all about the bipolar disorder. How we were managing it, could we spot the warning signs, etc. We did and do. He hasn’t had a major episode for a long time now, and we are moving forward. But the beast lives in the shadows, threatening to come and destroy our peace. His moods are different than other people’s. Things that wouldn’t affect other people can affect his mood for the entire day/week, etc. That was OK when I was in good health, I could cope with it. I could be there for him.

It was about 15 months after that, that I became ill. At first we just looked at it as another hurdle, one that I would get over. I mean I’d gotten over so many health problems so far. I would again. But as the following few months unravelled, we soon realized that I had a chronic illness that wasn’t going away. Lewis was fantastic, he supported me and never put me under any pressure. But as time went on, I began to feel like that wasn’t really the case.

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I started to feel resentful. I mean I’d supported him in his darkest hours, so I thought why couldn’t he do that for me? Don’t get me wrong, he is amazing, he works all day, often comes home and cooks for the family, does loads around the house, etc. But that wasn’t enough — I needed his emotional support. I’m going through the loneliest darkest days of my life and I need my husband.

 

The problem was he was feeling the same. He felt resentful, like I wasn’t there for him. He had begun to close down and so had I. Had we both checked out of our marriage? Did “in sickness and in health” mean nothing? Whenever we sat down to talk, it became a competition, who felt worse, who was the most tired! My mental health had also taken a nosedive and I wasn’t coping with my illness, so how could I expect him to?

In the end it’s all down to honesty, I think. Both of us want to honor our vows, we both want and need to be there for the other, but sometimes you have to put yourself first and that’s OK. Just as long as you tell your partner. It’s all about talking, and being honest with each other. We finally sat down and told each other the truth this weekend. We are both finding it hard, but we needed to talk, to remind each other how hard we fought to get this far. To remind each other that “in sickness and in health” isn’t just when you have the flu. It’s for life. Our illnesses are for life and so is our marriage.

Going forward it’s important for us to remember that he will have lows, and I will have flares, but I think this gives us an added layer of strength to our marriage. One that is worth the fight. We need each other and we need to support each other. Judgment is what you expect from outsiders, not the people you live with. But if you are not honest, how can the other person realize you feel that way? Don’t try and protect each other, be honest, be brutal. But most of all, be there. It’s the most important thing you can do in a marriage.

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4 Things Being Sick Can't Take From Me

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When I first became ill almost three years ago, the idea of there being an end to my illness somewhere out there for me was still a hope. But as the months dragged on and I searched and searched for a diagnosis and helpful treatment to no avail, that hope began to shrivel. Almost a year after I became sick, I finally had the diagnoses I’d been waiting for: new-onset daily chronic migraines and postural orthostatic tachycardia syndrome (POTS).

For a bit, that hope began to grow again, until I learned more about the nature of my problems, which is that they are chronic, meaning it was unlikely they’d suddenly run back to wherever they came from. And about three years into my life as a chronically sick person, I’ve discovered that treatments don’t always work. Sometimes a new medication or dosage change will seem to make a big difference for a few months, but sooner or later I’ll start feeling terrible again and need to find something else. Life managing chronic pain is one of constant readjustment.

 

I’ve now come to the conclusion that it’s fairly unreasonable for me to hope for a day when I can no longer worry about my migraines or POTS. But that’s not necessarily a terrible thing. It’s irrational for me to sit around every day on the couch at my parents’ house, hoping for the full and complete eradication of my pain. If I stop focusing on a future that might never be, I can start living now. I know that’s a cliché thing to say, but when you’re facing a problem that is likely to follow you around like a sad puppy you can’t console for the rest of your life, it’s true.

From now on, I’ve decided I want to stop counting on a miraculous healing to fix things in my life and start focusing on the good things I have. My chronic illnesses prevent me from doing a lot of things I could do before they entered my life, but they didn’t take away everything. Here are some of the things that have been able to prevail in my life despite being sick:

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1. My family and friends

When you get sick, you find out quickly who’s on your side and who is just floating around in the background. My family, though we have our ups and downs, fought hard for me at every doctor appointment and meeting with my teachers and school. The friends who have stuck by me through the many cancelled plans and episodes of time I was MIA are some of the most treasured people in my life. Being sick didn’t take them away from me, it instead showed me just how deeply I was loved.

2. My ability to work towards my goals

As far as chronic illnesses go, I know I’m blessed. Excluding the year I spent searching for a diagnosis, during which I was sporadically in and out of school as well as unemployed, I’ve been able to work towards a degree as well as hold summer jobs. After struggling so much with my illnesses in high school, I wasn’t sure what would be in store for me next. But I’ve learned to take things day by day, knowing some will be harder than others and some may look like steps in the wrong direction, but if I persevere, I’ll get to where I want to be eventually.

3. My faith

I often hear of how tragedy can affect people’s faith by either strengthening it or tearing it apart. Being sick has shown me how weak my body can be and how this life is not something to go through alone. I rely on my faith immensely; it’s what gets me through the good and the bad days. On those bad days, I find myself clinging even more tightly to God because I don’t believe I can live this life on my own. Having a positive attitude throughout the days where I never want to leave my bed would be next to impossible for me without my faith in a loving God.

4. My hope

I said I’ve stopped hoping for an Abracadabra! moment where I’d wake up one day and know my POTS and migraines were gone. But that doesn’t mean I’ve stopped having hope that I can still lead a full and happy life, because if there’s anything the culmination of my last three years has shown me, is that it most certainly is possible.

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Thinkstock photo via Maltiase.

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