Balance and Stigma…

Balance

Having a life with Fibromyalgia and Psoriatic Arthritis is a life spent trying to find balance.

I have to balance the amount of energy I spend at work and at home-while remembering to balance enough to get in some exercise- while trying not to neglect my son or husband.

I have to balance getting enough sleep-and finding time to catch up when I don’t.

I have to balance what I eat.  I can’t allow severe obesity to creep back into my life and cause MORE damage to my joints.

I have to balance the energy to keep up with a home.  Cleaning, paying bills and figuring out budgets.

With the help of my husband-I’m doing “Ok” finding the balance for all the things I just mentioned, but I’m failing miserably at finding balance with something else…

Balancing how much I verbalize what is “really” going on with my body.

What do I mean by this?

When do I say how I’m really feeling?  At what point does it stop being an intention of being informative and turns into (what seems to be) constant complaining?

I can’t figure this out.

I know that I “shouldn’t” mention how I’m feeling every second of every day because, let’s face it…that would get very depressing for me and the person listening.  But how much is too much?

I have a tendency to hold it in and then it all comes flooding out in an ugly cry, with me babbling about pain, making no sense, overwhelmed by all of it.

I have a tendency to “complain” more to certain people.  For example…I mention my pain a lot at work.  Not because I work in a PT clinic and I want them to “fix” me (although, maybe “sometimes” I don’t turn down treatment), but because they are “pain” people.  That’s what they do.  I feel like they have more patience for pain than other people do.  I also complain more to my husband.  He’s the only one who truly sees the bad days and the ugliness they entail.  But these few people can’t carry the load and burden of being the only people I talk to when I’m hurting.  I’m glad they’re there, but this isn’t really a fair balance for them.

Then there are people I’m afraid to mention my pain to at all, or people I try to act “strong” for.  My mother is a prime example.  As much as I’m sure she wants to understand how I’m feeling, the ugly truth of what it is “really like” is something I’m sure a mother never wants to see her child go through.  While I am able to break down into a limped, tear-filled, hobble of a walk with my husband, the thought of having my mother see me this way breaks my heart.  But yet, I want her to understand.  She is my biggest cheerleader and  one of my biggest supporters in educating everyone about chronic pain so how do I  break down this fear and find a balance between teaching her, but accepting she’s going to hurt for me when I do?

I know I’m trying to be too “strong” for Baby A some days when my body has had enough…but at the same time, will my husband understand if I “complain”, yet another night, and have to ask him to take over?  I know he would, but it doesn’t make it any easier to ask.  Will Baby A understand when he’s not “Baby” A any longer?

I don’t want to “complain” to other people working out, or exercising because I don’t want to seem weak, but all at the same time, I want people to understand why working out is such a challenge for me and why some days I can do it, and some days I can’t.

No balance.

I think a lot of this stems from a stigma chronic pain patients have for being whiney, for doing nothing but complain about their pain.  People stop listening to us, when in all honesty; we’re desperate for someone to keep listening so they can maybe understand how much these conditions truly consume our lives.

I don’t believe it does the mind (or body) good to talk about pain ALL the time, but I think it’s just as damaging to feel like I can’t.

Sometimes I just need to tell someone why I look tired.  Why I may be quiet.  Why I may be taking the elevator instead of the stairs.  Just getting it off my chest is mentally more therapeutic than trying to be strong.

Please be more patient with us.  If someone with chronic pain is “complaining” about their pain, they may just be looking for some understanding, a new ear to relieve the burden from the ear they usually talk to.  We are trying to get others to genuinely understanding what we’re going through, and as much as people don’t want to hear “complaining,”-to chronic pain patients, it’s not complaining-it’s our life…and it’s unfair that we have to balance how we talk about our lives.

consideration

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