I was on a phone call the other day with somebody who asked me what the most difficult part was about having multiple sclerosis, for me. I think she was surprised when I told her the worst part was Frustration. But, it’s the truth.
MS causes a certain amount of pain every day. There is a degree of increased fatigue that I have learned to live with. Likewise, the sleeplessness and the muscle spasms. I’ve even become accustomed to the loss of mobility, and to the medication injections 3 days a week.
The Frustration however … that gets overwhelming.
- Frustration that I can’t jump in a car and drive somewhere. Can’t travel across town or around the world.
- Frustration that I can’t attend events for my children, concerts, shows, sporting events.
- Frustration that I can’t dance, ride a horse, play golf or go bowling.
- Frustration that most of my personal relationships have faded away because I can’t participate or be present when others get together.
- Frustration that I won’t ever get the chance to visit historical sites I always wanted to see in Massachusetts, explore Montana, Wyoming and Colorado, take my kids to Italy, soak in the ocean views of Greece and Hawaii.
- Frustration that I can’t walk down the street and get myself some ridiculously overpriced iced coffee beverage with 5 adjectives and whipped cream.
Now, some of those are things that may have never been able to do because of monetary cost. I mean, the amount of money a perfect vacation in Greece would cost the way I envision it, might put it out of the question for me. The fact that it is not an option at all is what is frustrating.
I would probably have set aside some things on that list when I became a widow. For example, the romantic vacation in Hawaii was something Chris and I were planning before I became pregnant with our first child. He was super protective and worried about such long flights for me at that point, and we agreed to wait until a future date. Life interfered and it never happened, which is a pretty common experience for most people in some way.
But the rest of it? All completely stolen by my disability, and the frustration level caused by that is almost ridiculously high.
Frustration like this can eat away at your hopes and dreams, your faith and self-confidence, the spark within that makes you, You. It erodes your identity and can leave you feeling like a hollowed out version of yourself.
It’s far too easy for people to mentally classify the disabled by the disability and not much else. People get perceived through the lens of their disability, limitation or problem, instead of as a whole person. It is completely understandable for that to happen to some degree. It’s human nature to somehow sort and classify things .. Including people. It becomes a problem when you dehumanize people for any reason, such as race, religion or disability. As a society I think we are far more aware of discrimination based on race or religion then we are about discrimination because of disability.
Modern technology gives us an advantage over the disabled of the past. I cringe when I think of how much more difficult life was for the physically disabled in years gone by. For example, I am very aware of what a blessing it is to be able to access the internet and see incredible photos and videos of places that my disability will preclude me from ever seeing in person. We have motorized chairs, motorized beds and countless other creature comforts made possible by modern textiles and technology.
There are enlightened mental health care professionals, faith based support, and countless books out there about all kinds of feelings connected with the subject of disability. I’ve seen a lot of discussion about feelings of anger and sadness, which clearly are totally valid. I just think they miss the mark for me personally, and so I’m sure it’s the same for other people.
Frustration includes a good dose of anger and sadness, so why does the label matter?
Again, I’ll speak from my own experience …
Who am I going to be angry at? Life, or the world? My medical condition itself as if it were a sentient being? No. That would be a waste of energy.
It all makes me a little sad, but action is is nothing in comparison to the magnitude of the sadness I’ve experienced in the wake of the death of my husband.
No, the right word is definitely Frustration. Not the type you feel when you can’t get the cap off a jar, when another driver won’t let you merge lanes, or when the outfit you just bought goes on sale 2 days later. Those are causes of frustration was a lower case ‘f’. Life altering disability ‘causes frustration with a capital ‘F’.
I’m an enthusiastic advocate of fighting things that are wrong, refusing to accept what is forced upon you, taking as much control of your life as you can. Frustration is just one of those things you have to figure out a way to deal with because you can’t work through it the same way you can work through some other feelings. It frequently spawns new offshoots as new things come up to be frustrated about. It can help to commiserate with somebody or somehow express your frustrations to somebody, as long as you don’t get into a full-fledged pity party of some kind. If you let those feelings overwhelm you, you’re going to make things worse for yourself instead of better.
Everybody has frustrations and limitations. If you’re disabled, you have more of both. Acknowledge it and move past it somehow. Your life is too important to spend your precious energy on that which isn’t going to in some way benefit you or somebody else. You do have to acknowledge it though; Don’t pretend to yourself or everybody else that it’s unimportant if it’s actually important. Even if you don’t think anybody understands, you do have a right to your own feelings.
I’m not a mental health professional. I’m just somebody who understands, and if you want to you know where to reach me. I’m very good at listening to frustration venting!