When People Say Ibuprofen Will 'Fix' My Chronic Illnesses

The rumors started last year. My reality after my Ehlers-Danlos syndrome (EDS) diagnosis became everyone in my grade formulating my opinions about me. They either decided I was a telling the truth, or I was lying for attention; there was no in between. I was called a faker and told that I was just looking for attention. I lost countless friends, and I faced discrimination from the people I relied on the most. After a summer of advocacy and spreading my story though, I believed this unjust treatment would stop. I believed that somehow spreading my message would prove that I was truly sick. It didn’t. Recently, I learned that the rumors never stopped. People who used to be my friends and acquaintances continued telling anyone (including my friends) that I am a fake and that ibuprofen could heal me. These rumors could not be farther far from the truth.

For those who do not know how ibuprofen works, it is a NSAID (nonsteroidal anti-inflammatory drug). This means that it causes less inflammation to occur when you acquire an injury. Personally, my pain is not completely stemming from inflammation. My pain is from joint dislocations, migraines, and other complications from my EDS, postural orthostatic tachycardia syndrome (POTS), hemiplegic migraines, chronic fatigue syndrome, and celiac disease. Dislocations in people with Ehlers-Danlos syndrome are caused by loose connective tissue that did not form correctly. The aftermath is associated with inflammation, but they are by no means caused by inflammation and most of the pain comes from the joint or nerves instead.

I am on a NSAID as someone with a connective tissue disorder. It is vital for me to combat the inflammation that comes with multiple dislocations a day as that could destroy my body. I am on a medication that is a much stronger NSAID than ibuprofen, yet I am not cured. It may be easier to think of my condition in simpler terms, but my condition is by no means simple. I have a complex set of illnesses and comorbidities that cause multisystemic issues. My EDS is not limited to my joints alone. I also have skin that tears easily and heals with terrible scars. I have two autoimmune conditions that cause major circulation issues and inflammation in my GI tract. I have two types of migraines, one being rare and hard to treat. I have to have my heart monitored because we never know when it could tear.

I never know what is coming next. I was completely lost when my stroke-like symptoms turned out to be hemiplegic migraines. I was shocked when I was incapable of eating for three months and was diagnosed with severe celiac disease. I was miserable when I could not hear for months because of a blockage in my ear drums. I know that my struggles are not visible, and I hide it well through makeup, reading lips, and pushing through, but it is there. No anti-inflammatory will heal my connective tissue. No anti-inflammatory will fix my pain. No anti-inflammatory will give me my quality of life back.

Before people jump to conclusions about my conditions, I suggest they just ask me. There is no need to spread rumors around school. There is no need to minimize my suffering. I am incredibly open about my illness, so I encourage anyone, chronically ill or not, to just ask. I will not lie. I will not make it seem worse than it is. I will not exaggerate anything for attention. So, if I agree that I never have and never will exaggerate the truth about my illness, why don’t others agree to do the same? I ask people to please educate themselves on their statements before they make them, because they could be far from the truth.

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

Thinkstock photo by miflippo

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

Related to Ehlers-Danlos Syndrome

painting of a girl with brown hair.

How Am I Doing With My Ehlers-Danlos Syndrome? I'm 'Fine.'

I’ve written before about having Ehlers-Danlos syndrome. It’s a connective tissue disorder that affects my collagen and it causes chronic pain. For some reason the last part of that sentence is hard for me to write. Maybe it’s because I’m still coming to terms with my illness. Maybe it’s because I feel like I’m complaining. [...]
couple under umbrella in autumn park

5 Things I Need From You as Someone With Ehlers-Danlos Syndrome

Having a chronic illness is hard on so many levels, but having a good support system can make the difference between being able to handle the life or having it take you down. If you know someone with a chronic illness, then you know that sometimes it can be hard to know how to be supportive, especially [...]
young girl sitting on steps in school building

The Truth About Having a Sudden Onset Disability at a Young Age

Nobody tells you the truth about how hard it is to have a sudden onset disability at a young age. Although my condition is genetic and has always been a part of my body, the effects of it were sudden. I am now 18 years old. At the age of 14 (my freshman year of [...]
girl holding on to tree branch with one hand

What I Really Mean When I Say I'm 'Hanging in There' With Ehlers-Danlos Syndrome

Every Sunday morning, I hear the same question from a few caring people. It’s the same people every week who take the time to ask. I prefer not to lie, so, I usually answer “hanging in there.” Sometimes “hanging in there” is all I can manage to do. I have classical Ehlers-Danlos syndrome and several of the [...]