Finding the Balance Between Hope and Reality With a Rare Disease

When you’re chronically ill and especially when you have a rare disease, a normal part of your life consists of recommendations on how to “get better.” Whether it’s a new diet, another pill or some miracle life-changing herb your great-aunt Gertrude saw on TV, everyone wants to be the one who will help you “be cured” or at least “feel better.”

With every recommendation, I try to keep my cool and remind myself that it’s sweet they are thinking of me. But for the past two months, each suggestion has felt like bugs crawling under my skin, causing this extremely aggravating itch that just can’t be scratched.

On one particularly bad health day, when I once again got a suggestion on “what’s wrong with me“ and how I can “ get better,” anger and pure annoyance scorched through every part of my body. And at first, I didn’t understand why.
 With fury raging through my veins, I stormed out the room like a child, under my breath mimicking the words that were being said to me.

“They are trying to be helpful.“

“It’s something you haven’t tried.“

But the thing is, I didn’t want to. For months, my health has been on a constant decline. And during this decline, I realized the mind-blowing fact that I’ve stopped fighting.

I don’t know if it’s because I’ve been a victim of extreme “patient burnout,” but months ago, I came to the horrific realization I’ve been trying to “get better” since I was 14. Test after test. Doctor after doctor. Weird suggestion after weird suggestion — I’ve tried it. And lately, I have felt like the result of all that hard work is my health declining.

So after years of obsessing over my health, I looked in the mirror and committed to myself I’d quit trying to solve “problems” that, after over 10 years of trying, perhaps just can’t be solved. I decided I’d “wave my white flag” and end this 10 year war of “trying to get better,” instead accepting the fact that I’ll always be nauseous and my whole body will always hurt. Vomiting, dizziness, inflammation, shortness of breath and all the awful symptoms and threats to my life my illness brings are never going away. And I will be sick for the rest of my life.

So I need to give up the fight of “getting better,” expect not to live the longest life and focus on having my best life while I’m still here. And it was liberating. I felt as soon as I let go of that hope, I grasped onto life.

And when people questioned if activities or food would be bad for my health, or when medical tests would come back with less than ideal answers,
I’d just chuckle and say, “Who cares? With this, body I’m screwed anyway.“

It was a morbid, dark and sometimes depressing way to look at life. But after years of spending hours googling symptoms and test results and
anxiously tapping my foot at every doctor’s appointment, wanting more than anything to “feel better “ and being utterly crushed when they couldn’t help me, I removed my medical anxieties. And it was completely and utterly liberating. I was happier and honestly mentally healthier than I had been in a very long time.

But then, my gastroenterologist destroyed that glorious feeling of liberation with the cold hard truth. I was at my three month follow-up and told him how horrible my health had been and especially how awful my GI symptoms were. He then listed out for me every single horrible thing that is wrong with my GI tract (and believe me, it’s a lengthy list). He also detailed the issues he thinks could be added to my list of lengthy GI diagnoses. Then, he recommended new medications, therapies and diet changes he believes could help me.

It’s like he could hear the thoughts in my head screaming in reply, “No way in heck am I going to try this. I’m done being a guinea pig. This diet won’t make me ‘better.’ Forget this, I’m going to die young and continue to eat chocolate, thank you very much.”

He looked me straight in the eye and said, “Megan, you have some very serious illnesses and you’re on some pretty serious treatments. If you don’t put in the effort to get better, these are going to have a serious impact on your future — and you can’t just cancel out the future. You have to keep it in mind. All I want for you is to feel better. Wouldn’t my suggestions, as hard as some of them may seem, be worth it if you could even feel 50 % better?”

I feel as though my guardian angel slapped me in the face as I realized I totally excluded “future Megan” from my plans. Because my rare disease is primarily undiagnosed, we know it has tried to kill me — but we don’t know if that will be its main goal. We know my treatments are the main reason I’m alive right now, but I’ve chosen to ignore and exclude the fact that there just may be a future where middle aged me will likely suffer some major damage from choices and treatments I’ve had to make to survive day-to-day.

And I’d given up the hope of feeling better in any way. But his words echoed in my head and that slight feeling of slightly better made me crave hope, forcing me to abandon my promise to myself and once again try every weird diet and recommendation I could get.

So I left my gastroenterologist’s office with a packet full of instructions and a feeling of dread in my heart. Allowing myself to feel hope once again, my heart skipped a beat every time I got a notification on my online “My Chart.” My heart dropped to my shoes thinking about when a horrendous new symptom or massive flare up happens and doctors say, “I can’t help you because I don’t know what is causing this.”

I dreamed of what life could be like if I “felt better.” And I hoped that maybe, just maybe these weird diets would work, the scans might show something and this body may not be a death sentence. I hoped that I’ll be OK.

Once again, I had hope. It was beautiful and horrifying all at once.

I wanted to to wrap all these emotions with a pretty bow and decide which way was the most healthy way to deal with my failing health. But I found myself attempting to walk an emotional tightrope between hope and reality, knowing if I lean too close to one side, I’ll once again experience a devastating fall.

Because hope can be one of the most beautiful yet painful things you can ever experience. And a life without hope has seemed easier to me lately. But if you don’t have that small glimmer of hope that things can get better, what do you truly have to fight for?

As I’ve leaned toward the side of hope, remembering  and experiencing all the discouragement it could bring, I quickly tried to put more weight on the other side. But when I gazed at the drop, being purely realistic, I saw pure despair and absolutely no hope at all. Step after agonizing step, I’ve tried to find the balance between hope and reality. And I’ve realized when it comes to rare disease, maybe there isn’t one.

Sometimes when your health is stable, you walk the line perfectly — acknowledging the reality of your situation but still chasing your dreams.
But when you flare — when your body feels like the Titanic and no one can save you from the destruction that’s happening — sometimes you have to lean strongly to the side of realism. You have to know there won’t be any magic fairy dust that can save you. Life isn’t An Episode of “House” or “Grey’s Anatomy.” Doctors aren’t going to to mow each other over in the hopes of being the one to “cure you.” Your illness is chronic and for some people, it’s going to take months or even years to figure anything solid out, or to see all the doctors you need to see.

But on the other hand, sometimes to survive you have to “ white knuckle hold “ onto any hope you can. Believe this fight has a purpose. Spend hours on the phone coordinating health care. Daydream of a bright future you dream of having while you’re once again shoved into a giant radioactive tube, or as you lie in a hospital bed feeling like death — as heaven knows how many poisonous chemicals are being pushed into your veins. You have to believe this agonizing fight has a purpose.

You have to fully experience both sides of the spectrum — reality and hope. And be ready for the fall they both bring. Because I’m learning that in a battle as brutal as having a rare chronic illness, you can’t survive without both.

The fall from either side won’t kill you. It will hurt. Man, do those fall hurts. But those who love and support you through this illness — whether it be family, God or a higher power, amazing members of your care team, a spouse, your friends, neighbors or your children — they are the net we sometimes forget is there. They will catch us each and every time we fall.