Living with a rare disease can be an isolating and frustrating experience. The condition may not be well-recognized, even in the medical world, making it difficult for others to understand what you’re going through.

As someone with Behcet’s disease, it’s not often I meet someone who has even heard of my illness. It’s even rarer when that person is knowledgeable about all the symptoms and side effects my particular illness can cause, or understands how it can impact my day-to-day life.

Behcet’s disease is a rare form of vasculitis in which the immune system attacks the body’s blood vessels, causing inflammation. Since blood vessels are located in just about every part of your body, Behcet’s can affect any organ system, resulting in a wide range of symptoms. However, smaller blood vessels in mucocutaneous sites (places where mucous membranes transition to skin, such as the mouth, eyes, vagina and anus) tend to be affected more often.

According to the American Behcet’s Disease Association, some of the most common symptoms of Behcet’s include:

  • Mouth ulcers
  • Genital ulcers
  • Skin lesions (tender red nodules called erythema nodosum, “razor burn,” small red pustules)
  • Eye issues, including uveitis (inflammation in the front or back of the eye that can cause redness, blurriness or “floaters”)
  • Arthritis
  • Gastrointestinal issues (ulcers, lack of appetite, pain, vomiting, diarrhea, and rectal bleeding)
  • Lung involvement (cough, shortness of breath, and rarely, pulmonary artery aneurysms)
  • Central nervous system involvement (headache, confusion, strokes, personality changes and memory loss)

Though Behcet’s was previously thought to affect fewer than 1 in 100,000 people in the U.S. and European countries, recent data suggests the disease could be even more prevalent, affecting as many as 6 or 7 in 100,000 people. Since there are no definitive diagnostic tests that can confirm Behcet’s, it’s important to raise awareness so that those with the disease can receive proper diagnosis and treatment.

To help promote a better understanding of Behcet’s and remind anyone struggling that they’re not alone, The Mighty teamed up with the American Behcet’s Disease Association (ABDA). We asked our Mighty community and the ABDA community to describe Behcet’s disease and explain what it feels like to have the condition.

Here’s what our communities shared with us:

1. “My body is my best friend and my worst enemy at the same time.”

Exhausting. My body is my best friend and my worst enemy at the same time. I have to love it unconditionally knowing that I’m going to hurt again. I am very grateful for those rare days where I wake up with energy, and nothing hurting. I’m constantly learning to try and be more active while simultaneously not putting too much on my plate. Life is a constant cost/benefit analysis.” – Nitya P.

2. “The fear and anxiety revolving around the disease is palpable.”

As a parent of a BD daughter, the fear and anxiety revolving around the disease is palpable. Trying to assess symptoms that are ever-changing is like fitting the square into the round hole. The mysteries of daily living and thriving are often outweighed by survival. It can destroy simple confidence and you have to realize some things will never be explained. The body should never be the enemy, but it is.” – Polly LM

3. “I should be on the cast of ‘The Walking Dead!’”

Feels like I should be on the cast of ‘The Walking Dead!’” – Deb D.

4. “You get so used to feeling run down and in pain…”

You get so used to feeling run down and in pain, that if you get a day or two without any canker sores in your mouth or other mucosal membranous tissue, any red painful lumps on your legs and or blood clots… you feel like you won the lottery!” – Lisa A.

5. “Being forced to choose rest over action has taught me what activities are truly important.”

I don’t feel as devastated as I did when first diagnosed almost 10 years ago. Being forced to choose rest (always tired!) over action has taught me what activities are truly important and what isn’t worth my time. It’s a journey! I still need meds to control the mouth ulcers but it’s worth it to me. Of course, it’s always a challenge to deal with people who think it’s all in your head or you just need to exercise more or you look just fine, so how could anything be wrong?” – Marguerite L.H.

6. “People think I’m lazy, but I’m freaking tired!”

Frustrating. I’m tired all the time. People think I’m lazy, but I’m freaking tired!” – Wendy M.

7. “Seeking a diagnosis and treatment can be a long, frustrating journey.”

“Since Behcet’s is a rare disease, seeking a diagnosis and treatment can be a long, frustrating journey. I bounced around between doctors for more than 20 years before finally finding a specialist who was able to diagnose me. Still, most of the other doctors and nurses on my medical team are unfamiliar with Behcet’s, so any new health issue requires a lot of coordination and communication between my doctors – which can be exhausting and time-consuming to facilitate.” – Paige W.

8. “Everyday activities can be exhausting.”

Behcet’s is exhausting, frustrating and has made me a more compassionate nurse. Before being diagnosed I didn’t understand how isolating having a chronic illness could be. Everyday activities can be exhausting, each has to be weighed with if it’s worth the recovery time. Doctors have barely heard of it, specialists are almost nonexistent, treatment comes with major side effects.” – Kyra L.B.

9. “It has been like fighting a battle that you know you will never win!”

Behcet’s…what can I say? It has been like fighting a battle that you know you will never win! You don’t know from day to day, or even hour to hour, what you may be dealing with. Some days are a struggle from the time you open your eyes until the time you go to bed. Some days you think you’re doing alright and then it’s as if someone unplugged you. You are done! The pain and fatigue seems unbearable. Each person is different with their symptoms.” – Angie M.

10. “I know I shouldn’t have to feel embarrassed of things that are out of my control, but…”

“The symptoms can vary so much, and they’re not always easy to talk about. I know I shouldn’t have to feel embarrassed of things that are out of my control, but it’s just awkward trying to explain genital ulcers or bloodshot eyes or bruises from erythema nodosum in casual conversation.” – Emily F.

11. “Everything in life was a challenge.”

Behcet’s, the evil shadow that was one step behind me since I was a little girl. I missed school events, outings, was accused of being a faker by everyone but my doctors. Everything in life was a challenge from graduating high school to having a baby. Never a warning, never a cure, however we are resilient, that’s for sure.” – Brenda K.B.

12. “My body is fighting a battle I have no control over.”

My body is constantly in a battle with my immune system. My immune system fights everything instead of just fighting against something foreign. This is why I’m tired, my body is fighting a battle I have no control over.” – Leslie C.P.

13. “Many people in my life don’t understand and never will.”

Misunderstood. Is one word I would use to describe what’s its like to live with this disease. All my symptoms went misdiagnosed for years. I am in chronic pain that because no one can see it, is dismissed by most of my family and friends. Many people in my life don’t understand and never will because what this disease is doing to my body is not on the surface. I refuse to let it destroy my life but on bad days when I can’t even hold a pen because of joint inflammation it makes it hard to have hope.” – Kaylie E.

14. “I never know what will make it flare up.”

I find Behcet’s frustrating. I never know what will make it flare up. Some days I feel close to normal and get a lot of stuff done then I pay for it for several days. My skin can be clear in the AM and broken out by afternoon. Symptoms have improved since starting on new meds. I still wouldn’t wish this on my worst enemy.” – Shelly S.

15. “It’s emotionally and physically draining at times.”

It’s emotionally and physically draining at times. Putting on a front like you’re OK when you’re feeling at your worst becomes ‘normal’… I will say it’s made me appreciate so many more things in life over the years. ‘The small things mean the most.’” – Jessie H.

16. “I don’t know what it’s like to feel ‘normal.’”

“I’ve had Behcet’s my entire life, so I don’t know what it’s like to feel ‘normal.’ Even when I’m on medication that keeps me mostly in remission, I still feel like I’m only ever functioning at 40 or 50 percent. My body is always tired, achy and run down.” – Vera L.

17. “It’s like having a bunch of autoimmune diseases at once.”

It’s a disease that affects your entire body. You feel run down. It hurts to eat and talk. There are days where you wake up with a new severe pain in your head or flank or stomach to where you have to get checked out and rest more than you already are. It’s like having a bunch of autoimmune diseases at once, since Behcet’s attacks blood vessels, which are everywhere. But you get up every day and fight it, because you want to try your best despite the crappy symptoms Behcet’s is throwing at you.” – Alisa E.

18. “We are tough and we get through it.”

Getting a diagnosis is half the battle. It can take years, numerous doctors and tests. It takes that one doctor to go above and beyond. Often during the diagnosis process you are shamed that you have an STD and your symptoms are blown off. Fatigue and joint pain plague you on a daily basis. There are days when you dread having to go to the bathroom because it hurts so much. But we are tough and we get through it. Just remember you are not alone.” – Michael H. 

To learn more about Behcet’s disease, check out the American Behcet’s Disease Association’s website. You can also learn more about how to get involved and become an advocate here.

If you or your child are struggling with the symptoms or side effects of Behcet’s disease, you are not alone. To read more about the illness from people who have been there, check out the following stories from our Mighty community:

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Author: Paige Wyant