fibromuscular dysplasia support, education & advocacy
Fibromuscular dysplasia (FMD) is a complex disease that is most commonly seen in women, with systemic presentation that may include stenosis, aneurysm or dissection most commonly in the renal and carotid arteries, migraine-like headaches, dizziness, and tinnitus or a swooshing sound in the ears. Low bone density, joint laxity and degenerative disease in the spine also have been linked to the disease. FMD is considered a rare disease; however, it is also believed to be underdiagnosed.

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The Balancing Act: Preserving Our Relationships While Raising Awareness by FortunatelyFunny

People like answers, plain and simple. That is just how we are wired. If someone tells us something is wrong with us, then we are invariable going to ask how it might be fixed. When fibromuscular dysplasia strikes, it usually isn’t pretty. In my experience, it seems that if FMD has been hiding out somewhere—like the vessels leading to your kidneys, or those leading to your brain—when one does become symptomatic, it comes along as more than just a friendly nudge. So how is it that we go about our journey of finding these answers while preserving the day-to-day relationships with those around us? The longer one’s journey into FMD, the more difficult this may become.

When then health situation was critical were friends and family there for you? They might have brought food. They might have sent a card. In some way they were supportive. It was helpful and comforting wasn’t it?

Here’s the thing. People expect you to get better. YOU expect you to get better. And when one doesn’t fully “recover” from this strange and erratic disease, one starts to wear on people—close friends, coworkers, and loving family.

See the thing is, these friends and family members often can’t even pronounce fibromuscular dysplasia, so there is no possible way they can validate how we feel, and we can’t really ask that of them. So in the meantime, we reach out for answers and support in other places, weather it be via social media or reading through endless medical journals. Our need for answers continues while family and friends’ ability to help us diminishes. We can’t blame them now can we? It seems we can’t even give them a solid piece of information to grab onto.

Is there a cure? No. Can doctors prevent an artery from dissecting? No. Will the kidneys be okay after surgical intervention? We don’t know. Can doctors provide a pharmaceutical treatment to help patients feel better? No, not really, they will just treat symptoms and address whenever something really bad happens.

People don’t like those answers, and they don’t know how to react to them. I know I wouldn’t know how to respond if the shoe were on the other foot. The thing is, more than anything, patients want to continue to have normal relationships with those around us, and we want others to understand us. We want to be accepted. We don’t want to be alienated. We don’t want to made to feel like we are lazy complainers and we definitely don’t want this disease to run our lives!

Inadvertently we subject others to our daily ups and downs. Now I know everyone has daily ups and downs, but it seems that FMD is so unpredictable. The people we have close contact with on a daily basis have to live with our “crap.” There is no way around it. We don’t want them to deal with it, but when something invades our entire being, it is hard to hide.

No two days are the same anymore, as seems common with this disease, or any chronic disease/condition for that matter. We can no longer depend on ourselves. We can no longer make plans and stick to them; we can no longer be predictable. No one hates this more than we do. No one! However, we must give others the “right” in a sense to be agitated and frustrated with our unpredictability, right? They are human too. Just like us, they want our “old me” back. Knowing this makes our diagnosis even that much harder to swallow. We already feel guilty for not doing what we think we ought to be able to do. We hate disappointing our families and friends.

So before we can ever raise awareness for this disease, we have to be comfortable in our own skin. Getting there will be different for each and every one of us. How do we get there? I most definitely don’t have the answers. But for us, the patients, to get those answers, we have to start talking about it. But doing this while preserving our relationship with others will be quite the balancing act.

We have to seek our support where it is appropriate but we also have to be real to our day-to-day ups and downs. We cannot shove this down and only talk about it on FMD discussion boards, just because the people in our environment have never heard of it.

But we might scare them off! Yes, we might. I have seen it first hand. Utter a familiar disease and you see an immediate connection. Talk about Fibromuscular Dysplasia, and one loses eye contact. Still, I think somewhere we must find the appropriate balance. We stand to lose educating others if we are afraid to talk about it just because someone doesn’t understand it or has never heard of it. How are we going to help the next person in the ER tomorrow if we can’t be comfortable enough in our own skin to talk about it to those we encounter on a daily basis?

Somehow I feel these new rose-colored glasses I acquired through this disease somehow make up for the bit of me that has been lost in all of this. This is my way of translating the bad into good.

For each of us, it will be different, but together we can make a change. We can preserve those relationships, we can speak out about this disease and we will find answers. If by no other way, then by one little blog at a time.

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