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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 malformation, endometriosis, peripheral neuropathy, B-12 and B-1 deficiencies, scoliosis, disc desiccation, cervical radiculopathy, gallbladder disease, irritable bowel syndrome and mental heath issues (depression, anxiety).

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