Tuesday, May 1, 2012

Awareness Month

May is EDS awareness month.

I would like to make you all aware of some hard truths about EDS.

EDS causes its sufferers to be in pain. But that doesn't say much, does it? If you stub your toe on a coffee table, you are in pain. This is nothing like that. The pain caused by EDS is comparable to getting hit by a car. Every day. For the majority of your life.

The pain of EDS is also comparable to what was experienced by those unfortunate enough to have been chained to a medieval torture device, the Rack.

The pain of EDS is often misdiagnosed as Fibromyalgia (FM/FMS) - which is all-over muscle and connective tissue pain. In many places, FMS is a recognized disability, whereas EDS is usually not.

The pain of EDS, for some, is so great, and so poorly managed, that they feel their only choice is to end their life.

I know of one person who has committed suicide as a direct result of the pain caused by EDS. She was diagnosed, and her pain was being "treated" by doctors.

I have been suicidal myself, due to the pain from dislocated joints, overworked muscles, worn out joints, and the endless fatigue caused by the pain. The pain I am in caused me to become depressed to the point where I honestly couldn't care if I lived or died. I didn't see myself as having a life worth living, if I was to be in that much pain, every day, for the rest of my life. Thankfully, I met a nice person who had worked through similar issues, and he was able to talk me down (literally) from my ledge.

I read a letter today, written by a lady with EDS. In it, she expressed her lack of caring. She isn't to the point where she will actively take her own life (I hope), but she is passively allowing herself to die. She can no longer swallow liquids, so she will dehydrate to the point of death in a few days. Do you know why? The ER doc she saw didn't prescribe her pain meds. Medication she has been dependant on for years to have even the slightest semblance of a normal life. Medications which could kill you if stopped abruptly.

If we had more awareness, this could have been avoided. If we had more awareness, we would have more compassion.

If we had more awareness, we wouldn't need to suffer this life-sucking pain, or be called drug-seekers, just because we need more  medication for our chronic, unrelenting pain, than other people of a similar age/weight/sex would need for their "stubbed toe" pain.

So please, PLEASE, spread some awareness, so those that come after may be treated better than we have been.

Hugs, and I hope you all are as well as you can be.


Jo said...

Hi just found your site. Recent diagnosis in my 30's. Having lots of pain and problems. Really struggling physically and mentally, any advice would be great.

Am based in Scotland UK.



BubbleGirl said...

The best advice I've received (and often ignored) is to REALLY listen to your body, and allow yourself to rest as often as you need it.

If that means you take 2-3 times as long to do the dishes, so be it.

Each of us responds differently to any type of pain medication. Some people find releif from over-the-counter medications, but most of us need prescription-grade pain killers to ease the pain. If you find that after a week or two of using a medication, it hasn't helped at all, go back to the doctor, and tell them what's going on, and see if they'll give you something else to try. Sometimes "different" is better than "stronger" when it comes to pain medication, so don't just assume more of the same will be better.

Some people find an anti-depressant is a great way to reduce pain, as well as improve your mood -though I've not had any success myself with those.

Heat and/or cold can be helpful for fresh injuries. Also, getting your dislocated joints back where they belong as quickly as possible will reduce the amount of swelling and discomfort.

For the mental/emotional side of it, I would recommend talking to someone in greif counselling. I know this sounds strange, but a diagnosis of a life-long ailment feels like you've lost your health, and it needs to be mourned.

There are also groups and forums all over the internet where EDS patients go to find other EDS patients for advice, and even just to find someone who can say "I've been there" because sometimes that's enough.

If you have any specific questions, feel free to e-mail me or comment again. Here are some great resources for when you're starting out:

Facebook Groups "Ehlers Danlos Syndrome" or "EDS Today"