5 Lessons I've Learned About Accepting Limitations With Illness


With my chronic illness comes a lot of guilt. It is mostly guilt about being a disappointment to those around me. Guilt about the things I cannot do. Guilt about the events I miss out on. Guilt about the memories I cannot make. I also struggle with the many limits that come with living with a chronic illness. Sometimes it seems like there are more limits than there are easy decisions. I spent most of my adolescent years worrying that I would be forgotten and left behind by the people who told me to my face that they understood why I could not be there, but behind my back resented that I was not. It is a tough emotional weight to have to carry, especially at such a young age. I found that really only time and experience could teach me how to deal with these feelings. These are the best lessons I have learned:

1. Don’t blame someone for their initial disappointment.

It is the worst feeling in the world to have to tell someone I cannot do something and see the disappointment in their eyes, especially when I was really excited myself. It can be very overwhelming and cause excessive anxiety and depressionto try and console someone else while still patching up my own wounds. I try to remember that it is just a natural, human reaction to be disappointed when we do not get what we want.

I cannot blame people for that first reaction of frustration, but I do pay attention to what the person does after – after they have time to think about it. If they are still angry or upset with me, after they have been given some time to digest, than I have to question whether they can be the positive force I need in my life to persevere. Because that is what this is: perseverance. A person who cares about me will know how much it kills me to disappoint them, but more importantly, to have to miss out on precious time with them. Because that is really what I want most in the world is time with the people I care about. Every day, I worry there will not be enough of it. As I grow older, I notice the people who, instead selfishly complaining about how it affects them, turn to me and offer the needed reassurance and support. The ones who genuinely look me in the eye and say I will be missed and that I will get better soon to join them. The ones who reassure me that there is, in fact, time.

2. Remember that no one can do everything, and you alone will reap the consequences of overdoing it.

As the action-oriented person I am, some of those most painful words for me to say are, “No, I can’t…” I want to do it all, see it all, be it all, for everyone, all the time, but there came a point when I had to realize for my own physical and emotional health that it is just not possible. No one person, healthy or not, can do everything – attend every event, meet every obligation, live up to every expectation. There are some times when I physically should not do something because it could put my health at risk. That is really hard for me to admit because in many ways, I feel helpless: helpless against the situation and against my disorder.

With a fatty acid oxidation disorder, overdoing it – even by doing something seemingly minor – can lead to a quick downward spiral. One second I have what seems like trivial muscle aches and as soon as the next day, I can wake up unable to walk properly and be rushed to the hospital. This, I am not going to lie, is scary. To this day, even after 24 years, I have not ceased to be terrified. It is for that reason that I have found knowing myself and my health enough to gauge my limits is actually the most impactful way of taking back control and turning fear into power. Power to stop while I am ahead, to put my health first, to get better and to ultimately grow in the knowledge of my disorder.

However, as any world leader will tell you, with great power comes great pressure. There will always be people who do not understand. Honestly, no healthy person can really ever understand completely because they have never had to live through it. Just as those of us who have never lost a parent or been through severe trauma can ever truly understand what that person has been through and lives with every day, being ill, especially chronically, is not something easily understood. It is very complex—physically, socially and emotionally. It is not an experience that I would wish for anyone to truly be able to grasp because that means they have to go through it. But for those of us who are chronically ill, we must bear it and all the misconceptions and misunderstandings that come with it.

There are always going to be people who think you are exaggerating your symptoms to get out of something. Those people are always going to be around, but I have learned that, honestly, those people are not worth my time, and they especially are not worth jeopardizing my health to impress. At the end of the day, if I push my limits too far, no one will suffer the consequences – the pain, fatigue and wasted time – but me.

3. Do not grow angry at your illness.

I spent too many of my younger years very bitter against my disorder. I constantly obsessed over the questions, “Why me? Why did I have to get a rare, chronic illness that messed up my life? Why do I have to be in pain and miss out on some of the most important moments of my life? What have I done to deserve this?” It was not a fun way to live. I was constantly angry at the world and sometimes it would even come out on those around me who were only there to try to help. One day I realized none of those questions had answers and spending my time harping on unanswerable questions would get me nowhere. It is not like once I found the answer I would be cured, or even less sick. I had to accept and even embrace that this disorder, like it or not, was with me for life. The responsibility to make the best of it was also mine. My chronic illness will not define me as a person. How I am able to continue living a great life with a chronic illness does.

I began to use my knowledge of living with a chronic illness to become a more compassionate person and even help others who are struggling. By reaching out to others, I also started to realize I am not alone. There are so many people out there who live with illness or another sort of burden every day too. We all have our hardships and if we use our shared experiences to lift each other up, the power of that type of healing is immense.

4. Forgive yourself.

I often find myself overcompensating for my illness by trying to be perfect in every other aspect of my life. That kind of pressure only leads to one thing: stress. I am not perfect (not even close!) and I don’t need to try to be. Having a chronic illness is not what makes me flawed. Being flawed is a human characteristic. It is OK to be flawed. There are times when I am going to slip up, when it is going to get too overwhelming, when I am going to get angry, when I am going to push myself too hard. I have learned to forgive myself for those times. It is one of the most important things I can do because having a chronic illness is hard work. There is so much to juggle and as long as I am doing the best I can, that is what matters.

5. Choose those who choose you.

As I have gotten older, I have found one of the most important parts of life is not how many degrees or raises I get, not by which age I marry or have children and not by how many cars or houses I buy. What truly matters is the relationships I build and how I foster them. Are people better off because I am in their life?

The biggest piece of advice I can give regarding choosing which relationships to focus on, especially when you have a chronic disease, is choose those who choose you and continue to choose you every day, even on the bad ones. Don’t ever feel like you are not worth being chosen because your life may be a bit more difficult. Yes, life with you may be a little more unpredictable or stressful at times, but what you may “lack” you more than make up for with your dedication to being your best, healthiest self and your fighter spirit. Never forget that.

It is true that I may never travel to all the exotic destinations of the world. I may not be able to go to every party or be the life of every party. I may have to go to sleep earlier some nights and take more medication than any 20-something should have to, but the reason I do it, despite my own internal struggle most times, is so that I can wake up and be functional the next day. So I can be there to do my job, be there for my friends and family and, most importantly, live my life to the fullest and contribute to the lives of others. I may not always be able to be that spontaneous, live-life-by-the-seat-of-your-pants friend, but I will be there for you when you need me most, in those moments when you don’t feel like you have a place to turn. Let me tell you I have been there and the most helpful thing was having that shoulder to cry on. You will know I love you every day because no one knows better than me that love is by far the greatest healer.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via m-imagephotography.


Find this story helpful? Share it with someone you care about.


Related to Rare Disease

blue umbrellas with one red umbrella

When You're Too Rare to Fit in With the Other 'Zebras'

In medicine, a zebra refers to a very unlikely diagnosis. It comes from an old saying they used to teach medical students about how to think about medical cases that came to them. The saying went, “When you hear hoof beats, think of horses, not zebras.” So we know that Zebras are rare, but what happens [...]
woman standing in woods holding umbrella

Why I Struggle When People Tell Me, 'I Hope You Are Feeling Better'

I love that friends, family and even neighbors often think of me, ask how I am, or say they hope I am feeling better. It lets me know that I am cared for and not forgotten, even though my disease has pretty much caused me to live the life of a recluse over recent years. [...]
Doctor with stethoscope

To the ER Doctor Who Told Me I Was 'Wasting Time and Resources,' Thank You!

Dear Emergency Room Doctor, Thank you for being such a jerk to me! You may not have realized when you said I was “wasting emergency department time and resources” over and over that you changed me, but you did. While you may have thought I had “just a headache” and was “taking up space for [...]
IV drip hanging on a pole in hospital

The Day I Realized Chemo Would Change My Life Forever

This is an essay I wrote two months into my chemotherapy treatment for a freshman college English class. Today I am happy and healthy, however I am a completely different person because of this day. ​The phone alarm that is supposed to be a joyful morning song was comparable to needles in my ears on [...]