5 Things I Want to Tell People Who Feel Like They’re Facing a Chronic Illness Alone


Something I’ve learned over the years is that chronic illness never disappears. But it’s one thing to know that, and it’s another thing to live it. I’ve been struggling since I was 16, trying to figure out what illnesses are instilled in me.

I’m now 19.

I’ve been to countless doctors and medical centers for treatment. In fact, I’m still trying to figure out what I have yet to be diagnosed with. So far I have learned that I have gastroparesis, a chiari malformationendometriosisperipheral neuropathy, B-12 and B-1 deficiencies, scoliosis, disc desiccation, cervical radiculopathy, gallbladder disease, irritable bowel syndrome and mental heath issues (depressionanxiety).

I have yet to learn if I have Ehlers-Danlos syndrome (EDS), intracranial hypertension and diabetes. There could possibly be even more diagnoses coming my way.

So I wanted to give some advice to fellow “spoonies” out there who may feel like they’re facing a chronic illness alone.

1. Don’t just go to one doctor, go to many.

I say this because the first doctors I went to said I was perfectly fine, and here I am three years later with damaged nerves and a paralyzed stomach. If the doctor says you are fine and you know in your heart you’re not, go to another doctor and another until your health issues are addressed.

2. Be patient, no matter how hard it is.

It may take many years for you to find out what all of your issues are. Doctors can only figure out so much. Try your best to be patient with them and reiterate how much your symptoms bother you as often as possible. 

3. Stay away from doctors who tell you it’s in your head.

I’ve been told I need help, that I’m just seeking attention and that all my symptoms are fake. Don’t let what other people say keep you from finding the root of what you feel is wrong. I’m here to tell you it’s not in your head, and you are feeling what you’re feeling.

4. Find others like you.

Nothing is more gratifying than befriending someone who’s been through a similar situation. Whether it’s in real life or in a support group online, find the people who understand and stick with them. There will be many who don’t understand and think you’re just faking what you feel; cut them out of your life. Don’t let what others say make you doubt yourself!

5. Lastly, I would like to say that the journey never ends.

It will be in every aspect of your life and affect every aspect for the rest of your life. You may always have doctors, you may always be seeking a diagnosis and you may always be on medication. And no matter how harsh that reality may feel, I’m here to tell you that it’s going to be OK! This is your challenge.

My theory in life is that everyone is given what they can handle. So if you’re given many issues and illnesses and diseases, keep in mind you were given them because you were strong enough for it.

There are so many others facing the same challenges as you, and they’re here to offer a helping hand. Take that hand and survive this journey together! One person in the world who understands is all you need, whether they’re near or far. And I assure you there is someone who will understand!

Hang in there, warriors! We will make it through!

Lead photo source: Thinkstock Images


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


Related to Chronic Illness

drawing of girl sitting on stairs

Why I Find It Difficult to Open Up About My Chronic Health Issues

Opening up to people about my health is something I struggle with, yet since I am living without my family or any flatmates for the first time, it is increasingly important that I do exactly this. My recent attempts to inform people around me about my health made me realize that something so normal and personal to me [...]
doctor and patient talking

4 Things You Need in Order to Advocate for Your Health

When you get diagnosed with a chronic illness, the first thing you need to do is learn how to become your own best advocate. Actually, first, you need to allow yourself to take it all in. Get upset. Or angry. Cry. Throw something. Eat a banana split (or two). Then, when you are ready, pull [...]
parents and two teenage girls in fancy room

The 'Mommy Guilt Syndrome' That Pressures Parents With Chronic Illness

The hardest thing I had to deal with as a result of my chronic illness — this question resonated with me very quickly. I had a good cry about it last night and will probably have a bunch more in the next 30 years. For me it is motherhood. There is so much pressure today [...]
woman lying on bed with head on arm

For the Days When You Don't Have as Many Spoons as You Hoped

A chronically ill patient can always tell how well they are doing by when their next follow-up is. As recently as December of last year, I was granted — hold on to your hats — a three-month follow-up. And I made it. I made it exactly three months, to March 14th. In two years, that’s [...]