Physical Illness, Mental Illness, Invisible Illness

[Kimmio Laughterlove]

One more post in my long litany of posts. Gotta get it out of my system! It's actually really important to me but I have run out of steam to be any kind of poster kid anymore. It's exhausting and discouraging. I just want to be seen as a person - not a disabled person or person with mental illness. But all things are not equal.

@Justme I have read that people who have not identified or been identified as having a disability until later in life more often have better base-line self esteem. I had it better than some - but still, was the last to be picked for any team sports in gym, was called a retard daily in grade 6-7, I got pushed down on the playground once in grade 4 but most of the kids were nice enough until grade 6-7, I was humiliated by my "friends" in front of the boys, spent lots of lunch hours alone, etc. I tried so hard by high school to fit and not get emotionally pulverized, I lived in fear everyday of humiliation, my grades went out the window and I got in some trouble for smoking, drinking, skipping out. If I could do that I managed to mostly avoid the worst of the bullies. I was a smart kid, and previous to that a good kid. Being called "handicapped" never helped me. I wanted to run away from that label. I wanted to not be the kid who had to go to physio and special swimming lessons with other handicapped kids because we were handicapped. I needed to...but I hated it. I wanted to do everything on the playground that everyone else could do and I tried darn hard at it - but I knew I was behind, was different, was handicapped. I heard those words and desperately wanted to ignore them.

As an adult I got interested in disability rights. The adult world was even harder - but my parents did a little of both as a kid. Tried to ignore the label and treat me like anyone else...yet, it was discussed because I needed some specialized help...and I was ill prepared for how difficult life in the world as an adult would be. I always have been just myself but with the consciousness that other people look at me differently everyday. Troubles with confidence, troubles with jobs, with relationships...these are all more emotionally impactful long term than facing a staircase with no handrailing, but that is very anxiety provoking also - the older I get the moreso. I wasn't prepared to feel like 70 at 40.

I internalized more of that than I wish I ever had and I want to really not do that. And I don't want pills for it. I want to get to the bottom of it now that my insights are more mature than as a young adult when I was first diagnosed with depression.


This is a document of a community consultation in BC that gives a very good idea of the real barriers facing adults with disabilities...disproportionately living below the poverty line...and I assume, although other provinces have a better track record, many of the same stigmas and barriers, both internal and external, exists. Lots of people falling through the cracks. It's not hard to do. One can see why the conditions are rife for depression and anxiety that may not have been otherwise triggered under different social conditions, no? Doctors have no idea about this stuff. There's a huge disconnect.

http://engage.gov.bc.ca/disabilityw...ollection_26-February-Afternoon-Victoria.docx

 

[Kimmio Laughterlove]

@Justme I can relate a lot to your experience but I take a different view of the anxiety and depression. It's there. Anxiety very often, nearly everyday lately just walking outside afraid of falling or being hit by a car I am so stiff and off balance. I feel ashamed because my husband is athletic...even though he doesn't denegrate me I feel "less than" I used to because of the decline in my mobility over the last few years. I feel like I need a walker but I have my pride. The cane was hard enough to accept full time. It was my husband who actually convinced me to use it because I was falling frequently. But the lack of confidence in my steps feeds the anxiety and the anxiety feeds lack of confidence in my steps. Lately I have been getting to the middle of the crosswalk, realize I only have a few seconds, and the pressure to hurry makes me kind of "spaz" a bit - kind of jerking motion whereby if I were carrying something in my "free hand" it might go flying. But...my mom says to me suck it up and get over myself...my dad says...get on some pills...my friends don't know what to say...and I just want the opportunity to get in depth counselling first, and maybe something like art therapy with someone trained...without pills and medical labels. I know it will help. Anyway, that's what I'm going through. I don't talk about it much - I'd rather talk to a therapist about it.

 

[ChemGal]

but I'll keep hoping that there will be a world with no disability. Not no health differences - we are never going to be invincible. But a world where people don't self identify with clinical labels that disempower.

Things certainly can be better. Even if the way people are treated changes, do you not think there will still be disabilities? People can appreciate the skills others do have all they want. That isn't going to change the fact some people simply can't do certain tasks.

 

[Justme]

Kimmio I am sorry life is so rough these days. You may want to give the CMHA in your area a call - it sounds like you would qualify for their services and they have much of what you want in the way of therapy (art therapy, etc) and it is of no cost to the consumer. I am pretty sure you can self-refer. In Ottawa there is a university called St. Paul's that teaches counselling (technically it's a catholic-based university but no one every talked about their faith with me) and it's on a sliding scale for as little as $1 - not sure what's available in BC. The counsellor I met there was very nice and a good listener - I was glad to have her - maybe if you call the crisis number for your community they can tell you resources that are available to someone at your income level - you don't have to be in a crisis to call it. You have had a lot on your plate the last few months.

The fact that we all have different experience is what makes the world what it is. In DBT I learned to accept what life has given me and to build a life worth living and I'm working on that within the framework of knowing that I am not "typical" (notice I don't say normal).

I hope you were able to have a good sleep last night. Peace.

 

[Kimmio Laughterlove]

Kimmio I am sorry life is so rough these days. You may want to give the CMHA in your area a call - it sounds like you would qualify for their services and they have much of what you want in the way of therapy (art therapy, etc) and it is of no cost to the consumer. I am pretty sure you can self-refer. In Ottawa there is a university called St. Paul's that teaches counselling (technically it's a catholic-based university but no one every talked about their faith with me) and it's on a sliding scale for as little as $1 - not sure what's available in BC. The counsellor I met there was very nice and a good listener - I was glad to have her - maybe if you call the crisis number for your community they can tell you resources that are available to someone at your income level - you don't have to be in a crisis to call it. You have had a lot on your plate the last few months.

The fact that we all have different experience is what makes the world what it is. In DBT I learned to accept what life has given me and to build a life worth living and I'm working on that within the framework of knowing that I am not "typical" (notice I don't say normal).

I hope you were able to have a good sleep last night. Peace.

Thanks. I am not in accute crisis - it's just been tough going. Yeah, I know there are sliding scale services out there. I know all the community services out there. It used to be my job to know where all the low or no cost community services are. Unfortunately, in my work in employment counselling - it's a small world, the disability and mental health community - and I saw the downside of how a lot of those services operate so I am cynical. And I would not like to run into a former colleague or client anywhere. I would like real therapy with a real psychiatrist/ psychologist in a private office-study on a couch once a week! Just like the movies. Lol. I jest - but really...Someone with a lot of education in different aporoaches, someone experienced and wise about life. Perhaps a seasoned social worker. Not a student counsellor taking people on a sliding scale. Not a para-professional. I know they mean well but I want someone more qualified. On principle - I think that needs to be an available option in the medical system. I think that is a very healthy thing - real therapy. "Typical" people should be getting it, too. It's been a long time since I've had the opportunity for anything like that. And I don't want to be referred to a "Google shrink" who hardly speaks English who has to look up CP while I am right there in his office. That actually happened to me! There was a language barrier and he didn't know what CP is - a medical specialist! He prescribed me a med that made me put on about 20 lbs in a month. I took it for awhile - off label use for depression/ anxiety specifically - and then I read about a class action suit a couple of years before because it causes diabetes. And I never really was able to take the weight off after that. My metabolism just kind of slowed right down. So...I worry about developing diabetes too! I am not seriously overweight but bigger than I used to be and have to watch it. And God knows what other horrible long term side effects of other ones. Perhaps they've already done past damage to my sensitive central nervous system and that's why I am more prone to freezing up and "spazzing" these days. I don't trust them.

 

[Kimmio Laughterlove]

What I have been experiencing lately is not unlike the side effects I get from taking antidepressants - so perhaps you can understand my aversion to them. That's unacceptable - to give people psychotropic drugs and send them on their way to chance such side effects in their daily life - to simply report back in a couple of weeks for medication management. It's a totally antisocial unacceptable approach to mental health. To healthcare in general. Especially, when the patient tells you pointedly, and repeatedly about her concerns about it. And they get paid how much? I can look up stuff on google and recommend something based on a ten minute checklist of questions, too (yeah, I know they have lots of med school - they're experts -so why are they cutting corners? I know why - it's because the medical system is a fee for service production line now just like every other human services system - bottom line - and they get paid the same whether they take a few minutes to listen and care, or to simply prescribe a drug and send you out the door. Inknow there are good doctors out there - my husband got A+ care in hospital - but I haven't had good experiences elsewhere.) There needs to be a paradigm shift in mental health treatment and maintenance options. And according to the article I posted earlier upthread, I think we will see it in coming years.

I went to a walk-in clinic doctor a week ago because that's all I have right now. I needed to see her about something else too. She did prescribe me an NSRI this time. But she handed it to me and walked as I was just about to ask her about follow up. I asked the receptionist "where'd she go? I was just about to ask her a question and she turned her back and walked out." and I was told that she was already with another patient. Forget it. I don't trust her or the drug she gave me. I'm not filling the prescription. At least not yet - maybe not never. I have been put on a waitlist - I referred myself- to a clinic that has a holistic approach and operates like a regular practice. They have a team of doctors, counsellors and social workers who work together. It'll be two or three weeks to get in. I am willing to give that a try. Still skeptical...but willing to try.

 

[Kimmio Laughterlove]

Things certainly can be better. Even if the way people are treated changes, do you not think there will still be disabilities? People can appreciate the skills others do have all they want. That isn't going to change the fact some people simply can't do certain tasks.

Yeah. Nobody can do everything. Nobody. That's a given, so people with disabilities need to not be so stigmatized. A change of attitude. But there has to be a focus on what we can do, even if it has to be done differently. Continuing to look at it as "dis-ability" stigmatizes. It is only a label for the purpose of identifying a disadvantaged group - or a comparative disadvantage an individual has to the "norms" we currently value - it is a word to describe social disadvantage that is why it was coined by PWDs (otherwise each person's body function and diagnoses is unique) -it is the most disadvantaged minority "group" in our entire society being overlooked - even though it's a culture based on only disadvantage, current and historical. Not empowering. The label is to be considered temporary identifier of a group pushing for social change if it is to be empowering - until society as a whole removes the disadvantage. Not a fall back position society places people in hierarchically forever. We will continue to have bodies that get sick or are not "perfect". . But how we look at that has to change - if we care about removing inequality. If not, carry on as is. I came across a new term to me, in that community consultation link - "diversability". I like it. It is inclusive of everyone.

 

[Kimmio Laughterlove]

People with disabilities, formerly called handicapped, previously called invalids and cripples...didn't invent the word disability...but as a rights group adopted it and dropped habdicapped as their identifier - for the purpose of social change. That it is still looked at by so many as just medical impairment inherent to the individual rendering them faulty is a mistake and a continuation of the same ignorance that led people pushing for change to adopt the word in popular discourse for a reason. It's disappointing. How many have read the latest ideas that have come out of the UN Convention on the Rights of Persons with Disabilities, anyway (Canada is signatory to it)? So frustrating.