Stranger in the family

In honor of Mother’s Day (albiet somewhat late), this is a post about what happens to your family relationships when you’re a PWD.

Now, there’s an important distinction to make here – people who have always had a disability or chronic illness and people whose illness/disability showed up in their adult years.

I’ll admit, I’m limited in how much I can speak about a disability from a young age. I can only say what I’ve observed. PWDs who became ill/disabled young often have really difficult dynamics, which get worse around the time they become adults. Families that are either too helpful, or completely unsupportive, or a confusing mix of the two – ultrasupportive at times, and unhelpful at others. As PWDs become adults, they often find themselves in a position where their family does not want to admit they have grown up – parents who insist on coming to doctor’s appointments (and even if they give in on this one, demand to know everything that happened), panic when their child with a disability wants to move out and have a ‘real life’, call constantly to make sure their child is following their treatment plan, etc.

As for myself, my genetic condition became disabling (probably because of the addition of a secondary illness, fibromyalgia) as I moved across the country from all of my family. As a result, my family is very much not involved in my day-to-day life, and really not inquisitive about my medical care. My mother has called me her ’secret child’ – my sister tells my mother everything, but I really never have. It’s not that I shut my mother out, just that I am a more private person than my sister. Also, I suspect a lot of the way my sister talks to my mother is to get what she wants.

So we talk sometimes about my disability, usually when the medical bills are piling up frighteningly high, or I’m scared about the way the future looks for me, or going through piles of testing (which usually doesn’t show much).

The only time my family really interacts with my disability is when I fly over to visit, which has happened three times now. It’s an odd mix of reactions, to be perfectly frank.

The first visit, the thing I was having the most trouble with was my hands – so my mother changed the doorknobs on every interior door that I’d need to lever-style handles, which were easier for me as I just needed to figure out a way to push them down. They don’t seem to mind getting wheelchairs for me at places like amusement parks, or letting me sit somewhere while they wait in line and then just hop in when they’re near the front. They don’t make a fuss over the fact that I sleep longer, and take naps. They more or less get that I get a few hours of being ‘up’ during the day, and other than that, I must stay more relaxed and not be up and about, out and doing.

However, the emotional side of things is much trickier for them. You see, all of my life, they’ve called me a clutz or ‘fragile’ because of how often I get injured. It was, for me, an intense sense of vindication to be told that no, the injuries I had gotten all my life were emphatically NOT my fault and were related to this genetic condition. I’ll admit, I still harbor some resentment over the way they responded to my injuries.

There’s also this…I don’t know how to explain it. They don’t get, and don’t seem to want to get, what it is like to live as a person with a disability. The clearest example of this to me was a discussion we had in the car one day. My sister was pregnant at the time, and complaining about how people invaded her personal space to pat her belly. I mean, who would ask to pet or rub the belly of a non-pregnant person? Naturally, this made her very uncomfortable – particularly the people who just touched without asking. I compared it to random strangers on the subway asking about my medical history, and how that felt like a tremendous invasion of my privacy. I mentioned that when I was in a bad mood and people asked why I walked with a cane, I would tell them things like ‘it’s good for whacking annoying people’.

My mother’s response that I had a bad attitude. I should be glad that people are asking these invasive questions, because at least then they aren’t ignoring me. According to the PWDs my mother knows, being ignored was one of the worst parts of dealing with people when you’re disabled. And if they’re asking about your illness, obviously they care.

Now, I’ll be the first to say it, being ignored sucks. But that doesn’t make complete strangers asking personal questions (and feeling entitled to the information) any less unpleasant. This false dilemma – that either you will be ignored or people will pry – is terrible, and it hurt me deeply that my mother thought that my desire to have the same kind of privacy normal people get. Besides that…when random strangers ask why you walk with a cane, it isn’t that they care. It’s that they’re nosey and curious and gee you’re not quite normal so you have an obligation to explain to them why.

My father really just…doesn’t deal with it, and tends to be very quiet about it. My uncle and his wife have wanted to know what’s going on and how I’m doing, but no one else in the family inquires. My sister gets pissed if my disability causes me to get attention that she believes should rightfully be hers.

In many ways, my disability feels like a stranger in the family, and not a welcome one. Oh, they do things here and there to accomodate it. The physical side of things, they accept and work around, but the emotional side of things, they do not even want to acknowledge. And in general, no one wants to talk about it. My disability is something to deal with as little as possible – something I had not expected, and have been hurt by.