When the Treatment for My Chronic Illnesses Changes My Physical Appearance

1k
1k

I’m in the shower shaving my legs, and something doesn’t quite feel right. They feel doughy, bloated and not quite my own.

I’ve been on high-dose prednisone (also known as corticosteroids) for six months and have noticed side effects such as weight gain, striae (dark, thick stretch marks), buffalo hump (puffiness on the back of the neck), insomnia and moon face, along with many other more serious things like immune suppression.

I’ve been working for years to learn to love my body in whatever state it’s in because I’m a survivor — a warrior — but I’m only human and it’s hard.

I’ve been chronically ill with various health challenges throughout my entire life. Some of these have included asthma since childhood, a predisposition to upper respiratory infections (the cause isn’t quite clear) that have resulted in a few surgeries, a blood-clotting disorder, multiple vitamin deficiencies due to absorption problems (again, not sure why, but I’m getting better with an immune suppressant treatment) and adrenal insufficiency where I don’t naturally produce the stress hormone cortisol.

And again, this isn’t even everything wrong with me.

If there’s one thing I’ve had to learn with medical science, it’s that sometimes there are more unknowns than knowns. And while I’ve adjusted to certain aspects of what that all means — multiple doctor appointments a week (during “healthier times,” per month) an endless battery of tests, hospitalizations and medications with a huge host of side effects — some things remain deeply frustrating.

It’s not sympathy I seek. I just want to update my Facebook status about my weekend just like everyone else, even if my Facebook status says, “Today I got to eat solid foods for the first time in a few days.” Think of it as my version of “I went on a 10K run.” Everyone’s weekend wins are different, and I want to feel proud of mine. My health issues feel normalized to me, and I don’t want my friends and family to worry if I’m openly discussing them.

My weight drastically fluctuates within a year’s span, sometimes even week to week, depending on what medication I’m currently on. Knowing this, my closet ranges from a size 8 to a size 14 because I never know where I’ll be at. I’m fortunate, in a way, that my weight deposits itself in an hourglass-like fashion, so I was able to learn how to best dress for a specific body shape and work with it however it fluxes.

But I have to consistently remind myself not to get discouraged. I sometimes wish I could blame my rapid weight gain of 20 pounds on eating an entire cake because then I could learn to eat in moderation and still be enjoying said cake.

It’s hard to not feel defeated and feel like there’s nothing you can really do when you already eat extremely healthy meals — but look like you don’t — because you need steroids to breathe. Often times, people’s immediate thought when they see someone with some extra weight on isn’t, “Oh, they might be sick.” It’s usually, “They should be exercising.”

I have never been tiny or petite — I’ve always been proud of my naturally curvaceous shape — but when your body contorts into something beyond your choosing or control, it’s nearly impossible to maintain that pride. You’re exhausted from being ill and just want everything else to remain status quo. It’s enough to be sick; I don’t want to look sick, too. I often wonder at what point I should stop saying my body is curvy and instead just say it’s overweight.

***

Last year I was lying in a hospital bed recovering from food poisoning when a doctor walked in, along with a medical student in tow.

“She’s been on high-dose steroids for a while. Yes, she definitely has some side effects. This is great to show you. Look at how much puffiness she has around her face!”

He was elated that my side effects could be a living text book. Never once did he address me.

“I wonder if she has any striae on her abdomen.”

At that moment, I pulled up my shirt to reveal a recent 5-inch-long by 1-inch-wide deep purple stretch mark, zigzagging across my abdomen. It was their winning day. I refer to it as my tiger stripe to make it sound fierce. I try to find the positives in the things I find physically unattractive about myself.

***

When I had rapid abdominal weight gain from steroids in my late teens, I immediately went out to get my navel pierced. If I was going to have this excess fat, my abdomen was at least going to sparkle. As far as my face, I learned how to use makeup to contour it so its appearance would be less round and moon-like.

I’ve steadily worked over the last few years to be kinder to myself. When health malfunctions, it’s very easy to be hard on yourself. I’ve learned how to indulge in getting massages to help with tightened muscles. I meditate on a fairly regular basis. I rarely, if ever, drink alcohol, and it’s only ever one drink when I do. I eat in a health-conscious manner. I’m learning about oils to help with things such as fatigue, muscle tension and migraines.

But no, I don’t feel entirely comfortable with the way I look right now because, to me, I don’t look at all like myself. So much has visibly changed since September 2014 when I was first placed on an extremely high dose of prednisone. (I started the medication to combat a respiratory infection and asthma flair that temporarily placed me in the critical care unit while I was traveling.) Usually, I only need about two weeks of high doses, but this took two months to shake.

During that time, something wonderful did occur: I began to better absorb vitamins that for years I haven’t been able to. Instead of relying upon handfuls of pills, I now need much fewer. Food no longer makes me sick. I became more nutritionally sound, but needed to stay on prednisone until the more long-term immune suppressants could become effective. Now that my dose of steroids has decreased by a significant amount, I have to be weaned off of them very slowly as the body becomes adjusted to a certain dose.

Cortisol is the body’s natural steroid and because of adrenal insufficiency, I lack the ability to make the stress hormone. Every dose decrease has to be incredibly slow to allow my body to adjust. Last year, my dose was decreased faster than my body could tolerate, and I landed in the emergency room barely coherent. Think of it like a diabetic not getting enough insulin.

By the time I’m back to my baseline dose that only treats my adrenal insufficiency, I will have been on a higher-than-normal dose of corticosteroids for almost two years total. My body has suffered consequences.

But I’m slowly getting back there — back to my pre-puffy appearance and (hopefully) an increase in energy. I know my current situation is transient. I have to remind myself that I am here, my body is healing and I must be patient with what my body is and isn’t capable of at this time.

A version of this post originally appeared on Ravishly.

1k
1k
JOIN THE CONVERSATION
Tired businesswoman sleeping on the desk.

A Day in the Life of an Adrenal Insufficient Person

441
441

Since my adrenal insufficiency diagnosis was added to my existing connective tissue disease, my whole life has been turned upside down.

This new diagnosis I will add, has been far more difficult to manage than I could have ever imagined and if I thought my auto immune disease was hard enough, then I was very much mistaken.

Suggestions from well-intended people that I have “adrenal fatigue” and how supplements will cure me because it cured their aunty/uncle/mother etc, are in abundance, as are assumptions like “Are you pregnant?” when people see the look of pain on my face when I smell food at certain times of the day.

So with all this in mind, I thought I should write “a day in my life” — the symptoms I get and how I get through it. I will warn you though, this is a full on whinge alert because we all need to do that occasionally I am sure.

5 a.m. – Let’s start the day!

I don’t need an alarm to wake me up because my friend “dizzy” does it for me. I wake up dizzy, like really dizzy, feeling very nauseous and my heart racing. Trust me it is not pleasant.

I stare accusingly at my bottle of prednisolone. I say “accusingly” because as some of you may know, I hate the medication, but I love it because my body and I require it for survival. So dirty looks aimed at the pred bottle are the closest I can get to an act of rebellion.

Leaning over to the bedside cabinet I take my steroids and feel lightheaded while wishing I could lie in bed until my old mate “dizzy” has gone away and left me alone.

Swallowing my precious five milligrams of prednisolone, I remain in bed and close my eyes and wait for the steroids to work. Then and only then will I be able to get out of bed, because if I try too soon, I will fall on the floor.

At work:

When I first wake up, I cannot eat as it takes a while for the nausea to subside, so a glass of water is all I can manage. That is just the way it is and instead of fighting it, I go with it as it is easier.

By the time I leave for work I am feeling so much better. I count my blessings as I drive the coastal route to work where I can admire the ocean, the parrots and the stunning journey I am lucky enough to take.

Sometimes I put music on and sing without a care as to who sees me in the traffic lights.  My energy levels are almost normal, I feel “almost normal” and it feels pretty good as well.

I arrive at work at 8:30 a.m. and only then can I manage some breakfast, trying before that time is futile so I have my cereal with a banana and a hot drink at my desk.

Mid-mornings:

Mid-mornings have me craving salt big time. I dream about salt. Nothing else matters except for salt, and although I try and fight it, I find myself gravitating downstairs to the kitchen to buy a bag of chips (crisps) so I can satisfy my salt craving and it always surprises me as to how much better I feel once I have had some. Salt makes the world go round, well my world anyway.

Lunchtimes stink – literally.

Lunchtimes mean I need to shut my door, as the various cooking smells of whatever lunch is being heated up is guaranteed to infiltrate my nostrils in a culinary assault, hit the back of my throat and cause me to gag to the point of dry retching.

I never imagined the smell of curry or steamed vegetables for instance, could smell quite so pungent.  I never realized the smell of pot noodles or cuppa soups could be so overpowering. Who would have thought cucumber could smell so strong?  Since when did I have the nose and sniffing capability of a beagle?

So what does a person like me do when the smell of food is often the enemy and my stomach doesn’t work properly because when I do eat, I often get tummy cramps afterwards because the food appears to just “sit there” and give me cramps?

I shall tell you what I do. I have cold soup because cold soup has lots of salt, so I get what I want out of it and it is better than nothing. I have discovered cold beef or chicken soup serves its purpose when everything else fails.

I usually bring yogurts in to work and some fruit which is always good and failing that, I have a mug of Milo (cold of course so I don’t have to smell it).

As the day goes on…

As the day goes on, I get more tired and find that my five milligrams of prednisolone will deplete faster on some days than it will on others.  If I am busy/stressed then the running around or whatever I am doing will see me “crash” by around 4 p.m. and with the “crash” comes a few symptoms not that noticeable to others, but are to myself or those closest to me.

My speech becomes slower, concentration is harder and I suffer brain fog. I start to ache more in my joints and have to keep stretching and moving. The need to fall asleep is pretty intense and I have to watch myself that I don’t nod off at inappropriate moments. Sometimes it feels like I have been slipped a sedative as I fight the desire to sleep and wrap myself up in a blanket because I feel the cold.

At home:

Once I am home, I am tired and completely drained and depleted of energy. My two dogs  are twitching and wriggling with excitement pleading for me to either walk them or play ball with them in the garden. Some days I can do neither because my body is refusing to cooperate with my need (and that of my dogs’) for exercise.

I need to get showered and changed out of my work clothes, but everything must be done in stages because this is exhaustion on a whole new level. Starting with sitting on the bed, I persuade myself that a two minute lie-down before my shower wouldn’t hurt, surely?

Ten minutes later I wake up and realize I am still in my work clothes. Now the cat is sitting on my chest using it as a pin cushion while he makes a bed on me, because he thinks that I am there for the night. My suit is covered in cat fur, and I need to clean it –but it can wait until the morning.

I manage to shower and change and then go to the living room where my pets are asking for their tea. The sofa is teasing me and I so badly want to lie on it. Every single thing I do is an effort and every task seems mammoth.

My evening on the edge:

Another “gift” my adrenal insufficiency gives me is very bad anxiety that simply cannot be rationalized. I get irritable and snappy, but most of all this kind of anxiety is so strange I cannot explain it or make sense of it — but I am most definitely on the edge.

Anxiety like my mate “dizzy,” is a regular “friend” because it seems to arrive like clockwork along with the fast heartbeat that makes its presence known at around 6:30 p.m. every single evening when my steroid dose runs out and my cortisol production runs low.

“Your heart is racing,” my husband said when he was hugging me on the sofa one night.

Racing? Yes, that kind of sums it up, but for want of a better description I would say “working harder than normal” probably suits it better.

Because that is exactly what it feels like, my heart feels like it is working pretty darned hard and more to the point, I am aware of it. It’s not scary, but it makes you tired and is made worse when something makes you jump. Being easily startled seems part of the package of this whole adrenal issue.

It has put a whole new meaning to the phrase “jump out of my skin,” which is why I have stopped watching films like “Wolf Creek” — and that is a crying shame as I have a thing for John Jarrett the leading actor.

Wired for sound:

“Can you turn the TV down?” I say almost every evening to my poor, long-struggling husband who ends up watching one of his favorite movies with the sound down so quietly he can barely hear it. Except I can hear it; I can hear every whisper from the actors to the point that they may as well shout.

As the evening goes on my sensitivity increases. Everything is loud. Tt is loud when it shouldn’t be loud and when it is meant to be loud, then it is pure torture and I have come to relish and seek out peace and quiet in the form of no TV and the sound of silence and even then, that can be loud.

Forever is a long time:

Having been advised that my adrenal insufficiency is more than likely permanent, I now have to get my head around the word “forever” or should it be “for now,” as we don’t know what is around the corner in the form of a cure?

For now though, I eagerly await my next appointment and a change of steroids that will hopefully make a big difference to my life.

I await the return of some energy and the loss of brain fog and slow speech. I await the return of my appetite and the loss of my friends “dizzy” and “anxiety.” But most of all, I await the return of the old me, the person that has a good life to lead, a husband and good friends to live it with.

Because I know she is in there somewhere. She has to be, and when I find her I shall kick her butt for staying away for so long.

Follow this journey on The Pigaloo Diaries

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

441
441

RELATED VIDEOS

JOIN THE CONVERSATION

If I Was Well for Just One Week

46
46

If I was well for just one week, I would get up each morning and tidy around the house. I would take a quick shower and get changed into some nice clothes.

If I was well for just one week, I would make breakfast for the family. Get my daughter ready for school, brush her hair and put them in pig tales.

If I was well for just one week, I would walk my child to school each day and collect her at the door when the school day ended.

If I was well for just one week, I would gather all the junk in my home and take it to the secondhand market. If I was well for just one week, I would go swimming and walk the dogs for exercise.

If I was well for just one week, I would go on a trip to the beach and spend the day in the sand walking the promenade, taking my child on rides and visiting the shops.

If I was well for just one week, I would go on an evening date with my husband and have fun — the kind of dates we had before I was diagnosed with adrenal insufficiency.

If I was well for just one week, I would cook my favorite meals in the evening, make gorgeous salads and even do the dishes after tea.

If I was well for a week, I would have the strength to give my daughter a shower, do story time and hang out for an hour talking about anything and everything.

If I was well for a week, I would not have to go to appointments, have blood tests and use all my energy visiting specialists.

If I were well for a week, I would feel more in control. I would feel more understood and more able.

But I’m not well, not even for one week and the simple daily tasks exhaust me. Many I cannot do. I have to pick and choose. I have to accept help. I can’t be the mother I want to be. I can’t shower, tidy, cook or clean without feeling wiped out for days. I can’t go out without being wiped out for weeks.

I am not well. I have adrenal insufficiency which brings with it chronic fatigue, and this is my life.

I’d love to feel well just for one week or even one day.

When someone sees me out and about I’ve often had many days resting beforehand and will have many days resting after. People will say, “It’s great to see you looking so well.” Sadly I am not well. I am not better just because I am trying to have a moment of normalcy. I am simply trying to life with a condition which for now will never go away.

Follow this journey on Days in Bed.

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? Check out our Submit a Story page for more about our submission guidelines.

46
46
JOIN THE CONVERSATION

3 Things I Learned After I Was Diagnosed With a Second Chronic Illness

230
230

This past fall I felt sicker than I have ever been in my life. Fatigue covered my days like a heavy fog. Nausea haunted me, and I found myself vomiting a couple days a week for no good reason. I forced myself to go to class to see my therapy clients but otherwise spent the rest of my waking hours in bed.

It was such a confusing season, largely because fatigue is a big part of my autoimmune disease, ankylosing spondylitis (AS). I’m used to debilitating fatigue, but this was worse. Oddly, my joints weren’t hurting, and usually my fatigue corresponds with intense joint pain.

When I start to feel sick, my first thought is that I’m in a flare-up of my disease. It’s usually that simple. When something new hurts — like my eye — I figure AS can affect that, too. (Don’t worry, I see a doctor when odd pains crop up!)

When that’s not the cause, I start thinking I’ve caught an infection or a virus because being on multiple immunosuppressant drug therapies definitely make me very susceptible to infections. But that wasn’t it.

Katie Jo Ramsey, right, with her friend, Bess.
Katie Jo Ramsey, right, with her friend, Bess, who also writes for Anchor for the Soul.

Days of nausea and fatigue turned to weeks. And then weeks turned to months. After every doctor visit and new medical test, I had no answers. In those months I began to feel sad. Really sad. A heaviness veiled my normally happy disposition. As a counselor, I knew I was experiencing symptoms of depression. But being sick with no answers is inherently depressing, so I figured that was why.

My rheumatologist faithfully searched out the cause of my mystery illness and was determined to see me well. Both her instincts and mine told us this wasn’t AS and likely not rheumatologic. When the blood tests, CT scans and biopsies came back normal, she tested one more thing. “It’s a far-off chance that it’s this, and I’ve never seen it in my entire career, but let’s check it anyway,” she said.

The day she called with my test results I was fully expecting to hear the results were, again, normal. The undiagnosed but very sick know normal test results are often the worst news to receive. Abnormal or positive test results mean answers, mean help and mean life can get better than the hell you are living.

Almost no one understands why getting bad test results is such good news except the determined and courageous patients who haven’t given up on fighting for answers to the cause of their illnesses. But that day, I got the beginning of an answer.

My doctor informed me that during my cosyntropin stimulation test my adrenal glands produced virtually no cortisol, which meant I had adrenal insufficiency (AI) . The onslaught of Google research commenced after I learned all the things I had been experiencing, including depression, were symptoms.

I needed to start steroid therapy to replace the cortisol my body wasn’t able to make. Hydocortisone made my life immensely better in the span of about two weeks. But managing my new condition hasn’t been entirely stabilized, and we’re still determining the cause of my secondary adrenal insufficiency. Developing an additional condition has meant seeing more doctors (specifically, an endocrinologist), having even more regular blood work and sucking up the fact that I’m dependent on steroids daily to function. (Really, to live. Without steroids, adrenal insufficiency patients can go into life-threatening adrenal crisis.)

Developing and managing a second disease requires bravery. “About 25 percent of autoimmune patients have a tendency to develop additional autoimmune diseases,” according to Maedica. And that diagnosis will bring new challenges and opportunities to process, grieve and hope for the better life we all want. Six months after finding out about my new condition, this is what I’ve learned:

1. Listen to your body.

When we are attuned to our bodies, we often know when something is off physically. Trusting your internal sense that something is off can enable you to be persistent to get the care you need.

2. Value your health.

The fear of not getting answers and being judged as a complainer or drug-seeker can keep us from pursuing medical care. If you are experiencing new, unexplainable and frustrating symptoms, value yourself enough to do the frustrating and scary work of seeing your doctor.

3. Let yourself grieve.

Giving yourself the space to grieve your illnesses isn’t a pity party. Even though you’re used to being sick, it’s a blow to find out that one more thing is wrong with your body. Let yourself cry about it. Talk to a friend. Go back to see your counselor. (That’s what I did.)

Whether you have one diagnosis, two or five, I hope you’ll be brave and value yourself today.

Follow this journey on Anchor for the Soul.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

230
230
JOIN THE CONVERSATION

To My Mother, Who Traveled Across the World to Help Me Battle My Illness

208
208

Dearest Mom,

I know you despise it — leaving on a whim, leaving where you’re contented to go elsewhere. One of your favorite works of literature is “The Agony and the Ecstasy,” the story of Michelangelo’s life. I can’t count the number of times I’ve pleaded with you to travel to Rome to see St. Peter’s Basilica, or to Paris, to walk the streets where Hemingway once roamed. Your answer never fails to change: “No, I have no desire to see anywhere but here.” (“Here” is Sri Lanka, the beautiful, lush island my parents and sister returned to after almost 30 trying years in the States.)

Your anxiety tends to get the best of you, especially when you’re traveling alone. I understand.

“Which gate do I go to?”

“Who’s going to help me get there?”

“I only have six hours to get from one gate to the other!”

I know the 10,000 mile, 24-hour journey is not easy. So when I threw in the towel last December, after two years of draining, inexplicable fatigue, reaching the point where I could barely walk the dog around the block, I knew what I was asking of you when I asked you to come. I made that phone call, every bone in my body resisting. I had no choice but to finally ask for help.

That week, the plane ticket was booked (thank you, Dad). I know you had been wanting to come for a long time. The ask is difficult, because I know what you’re leaving behind  my older sister, who has a disability and lives with paranoid schizophrenia, and my father, who unfortunately has faced some health setbacks the past few years. I always thought I could handle my illness and its many complications with just my husband and I, but at that time every doctor’s visit felt like an axe chipping away at the core of my inner strength.

Ashanthi and her mother in the hospital.
Ashanthi and her mother at the NIH.

What I want to say is that you saved me, in every sense. You went from a sunny, humid 80 degrees to single-digit weather that bites and cuts through, regardless of how many winters you’ve experienced. And in it, you did the groceries and walked the dog. You kept me company. The almost two years I spent being unable to work or be around people on a daily basis was excruciating. You were someone to talk to while my husband and friends were working during the day and being busy. You were someone to sit with in the doctor’s waiting room, and a hand to hold after my appointments. And after our long, 10-day stay at the National Institutes of Health (NIH), you watched me break down in tears after the doctor confirmed my latest diagnosis, idiopathic secondary adrenal insufficiency. You didn’t shed a tear. You let me cry. You let me say my piece to him, when I was frustrated at the world for having a disease where the natural history is still unknown.

When the doctor left, you said, “I am so proud of you.

To say you are our family’s “rock” would be doing you an injustice. A rock is stiff and cold, jagged and without empathy. You are our family’s banyan tree in which we can find cool shade when life exhausts us. Your roots run deep into the Earth, so even the fiercest gusts of wind won’t shake you. The only time your branches came close to bending was when life took one of your own, your youngest flesh and blood, our littlest sister. But your roots dug a little deeper, and you continued on, for us.

For every obstacle in life, I remember your many more, and instead of an axe chipping away at you, it has somehow made you stronger. For every time I am thrust into the darkness of the unknown with my illness, I remember your early days of motherhood, before the Internet even existed. The days when you sat alone in a tiny apartment, in a new country, without family or friends to comfort you as you watched all three of your children fail to medically thrive. Yet, your hope and love carried us through. You waited years to finally return home, only to be uprooted once again to get on a plane, scurry through the hectic airport crowds, and meet me in the middle of a Midwest winter.

For every mile you’ve traveled to see me, thank you, a million times more.

To the mothers who refuse to give up for the sake of their children with disabilities and illness, thank you. To their sons and daughters, don’t be afraid to ask for help. It might be the best thing you’ll ever do for yourself.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? *If you are the special needs mom, challenge a loved one to respond to this! 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.

208
208
JOIN THE CONVERSATION

When I Learned to be Kind to Myself With Adrenal Insufficiency

825
825

April marks Adrenal Insufficiency Awareness Month. I am always very open about the health events I go through. This is my most challenging and frustrating of my chronic illnesses. I will share with you what it is like to experience adrenal insufficiency. Interesting fact — John F. Kennedy had this, too!

Sitting on your kidneys are two triangular shaped objects called adrenal glands. They are the fancy top hats to your kidneys. In your brain is a pituitary gland that is the size of a peanut. It sends messages (not via text message) to your adrenals to make stress hormones. You may have heard “stress hormone” or “cortisol” on “Dr. Oz” in relation to stress leading to belly fat. While this may be confusing, cortisol is actually 100 percent necessary for a person to remain alive.

My body is like, “Awww heck no, I’m not making this stuff.” It was scary when I was diagnosed years ago because I couldn’t keep down nutrients and was slipping into a coma. I’ve never written an essay about it because it’s still pretty traumatic for me. Here’s the thing — cortisol is necessary to live and is also released when are under any kind of major body or emotional stress. Except mine doesn’t.

I have my daily dose of medication and have to stay deeply in tune with my body to know if I need more medication. If I somehow don’t notice, I start to become very ill. However, I know myself well. This makes any stress situation — medical or emotional — more challenging. There’s also no “one shoe fits all” protocol for everyone. What’s hard is so many paramedics and ER staff seem oblivious to this condition during the time when treatment is desperately needed. I’ve gone from barely able to be conscious to perking up with a simple injection. They just need to be informed to provide that injection, which is why awareness is crucial.

It can be a challenge at times when I look at what my peers are able to accomplish. It’s then that I remember that life is not a race. It’s hard when I lack the energy to do typical things that 20-somethings are known to do. I went through a phase of trying to push my body beyond its limits. I had a night or two of trying to go out to clubs or bars, only to realize that it made me sick and zapped my energy for weeks. It wasn’t worth it. I do love traveling, and this also tends to put a lot of stress on my body. I have learned to arrange flights to be as short in duration as possible. I make sure my first day upon arrival is a rest day.

In time, I’ve learned the only way to live successfully with a chronic illness is to be kind to yourself. I’ve been fortunate that my calling in life is writing, something easily accomplished while in bed. I will be taking part in an 8K walk in September for the hospital I attended as a child. It will take me months to build up to walk that far. It could be easy to spend days frustrated about what I used to be able to do — endless energy, staying up late, not needing rest days, or not having to worry about making sure I have pills with me at all times. Instead, I take pleasure in spending time with loved ones and pursuing my creative endeavors.

man and woman wearing aprons at painting studio
Sami painting with her boyfriend.

What’s challenging about adrenal insufficiency is that no case is the same. What I’m capable of, others may not be capable of at all. Some people are able to do far more than I am able to. There is no winner. It’s also easy for others to be confused that you are actually ill because you look so well. It’s frustrating when I or my fellow adrenal insufficiency cohorts are expected to be a representation of bravery just because we have an illness we didn’t choose to have. It’s important for all of us affected by adrenal insufficiency to take the time to grieve the life that was once lived before diagnosis, and it’s helpful to have the support of family and friends during this time.

It can be a very uncertain life, but can’t that really be said of all things in life? I keep going when I can. I stop and rest when I need to. People with illness are often told they are an inspiration just because they are disabled. I would only hope that the reason anyone would be inspired by my journey is because it encourages them to not feel like they are alone or that all of their hopes and dreams are crushed due to a diagnosis.

It sucks, I won’t lie. Even if my medication is fairly regulated, I do fatigue easier than my well friends. Running marathons probably isn’t in the cards for me, but I can take a fun Saturday painting with my boyfriend. It’s all about reshaping your life to focus on your capabilities versus be continually disappointed about what isn’t possible. I have a wonderful life and know that medical advances are always on the horizon. It’s always scary to talk about my health issues because I can easily pass for well. If I don’t speak up, who will?

Make no mistake… I’m not brave. I’m living!

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.

*Sign up for our Chronic Illness Newsletter*

825
825
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.