I found this article today while browsing through news
articles on Google news. Toni Bernhard wrote an insightful article titled “The
Extra Burdens Faced by Young People with Chronic Illness”. I haven’t ever
encountered anything written by this author before and I know very little about
her. From the way this article is written, however, I must say that I am
impressed by her insight. She has made it clear to her readers she is not a
member of the target group about whom she writes, but she has nevertheless
proven (to me at least) that she has sufficient experience interacting with
this group to write competently about us.
The article identifies seven general areas in which people
under 30 face particular challenges in having chronic illnesses. I have to say
that upon first reading this I identified with most of these areas. To briefly
summarize, the seven areas are as follows:
- Young people are treated as if their health issues can’t possibly be chronic.
- Young people are repeatedly told: “You’re too young to be in pain.”
- Young people worry that they’ll never find a romantic partner.
- Young people often can’t complete their education.
- Young people must sit by and watch others their age participate in activities that are out of reach for them.
- Young people may be stigmatized by others.
- Young people may be burdened with worries about the future.
Even though this is a public forum, I’d like to share a bit
about each of these areas as it relates to my own experiences.
The author describes herself as having a stereotypical view
of “young people” as: totally healthy; temporarily ill with an acute malaise;
or terminally ill. In other words, the concept of a young person with a chronic
illness was oxymoronic and simply never contemplated. I confess – before having
these conditions the thought of a young person with a chronic illness hadn’t
fully realized in my mind either. In fact, before having these conditions I
never had any reason at all to ever know what chronic pain was in the first
place. Particularly, the author remarks that when young people are told by
others that they can’t possibly have a chronic illness they feel disregarded. I
can verify this observation as accurate from my own experiences. The author
uses the example of a young woman with MS travelling on public transportation
being asked to give up her seat and being spat upon when she didn’t. I, too,
use public transportation every day. I have “invisible conditions”. If there
are no vacant seats, one woman on my route routinely will look to the nearest
spot she wants to sit in closest to the front of the bus and shamelessly ask
the person to give up their seat. She then turns to the person and tells them
that if they are lucky enough to live to her age then they will need a seat
too. One day this woman decided that I should give up my seat for her. It was a
particularly bad day for me, but I gave up my seat anyway. Why – because I have
been told that (like #2 in the list) I’m too young to have the conditions I
have. In other words, I don’t feel like society will validate me or my reasons
if I were to stand up to people like this woman on the bus and boldly declare “I
have a disability”. I know that society thinks this because I’ve seen it first-hand.
It’s true: young and chronic don’t fit together in the same sentence, and
people who have chronic illnesses and are young just plain don’t seem to fit.
The first time I was told that I was too young to be in pain
and too young to have the conditions I have I was totally taken aback. I felt a
wash of emotions come over me all at once. I didn’t know what to say in
response. I was being told this by someone I love and trust and I was startled
that this person would make this comment. The author suggests that the general
public should become more aware that young people can have chronic illnesses,
too. This is her suggested tonic to what ails. I think this would go a long way
towards finding a solution. I also think that a splash of “think before you
speak” wouldn’t hurt. I know that I have made some pretty “foot-in-mouth”
comments in my life as well, so I’m not speaking from atop a pedestal here. All
I know is that when people tell me this I still feel hurt, not only by the
words and the thoughts behind them, but by the fact that people whom I love and
trust are the ones saying this to me.
I can understand the author’s commentary that many young
people with chronic illnesses don’t get to complete their education. I can
proudly say, however, that this is the one area identified by the author in
this article to which I cannot relate. I pushed myself to get through my
undergraduate degree on a full-time basis, then I pushed even harder to
complete my graduate studies over four years of night school while working
full-time during the day. But I did it – at great to my body, but I did it,
nevertheless. I take pride in this.
I can fully appreciate
#5 & 6 on this author’s list as these are some of the main reasons why I
end up spending so many weekends at home, and so many evenings inside or in bed
early. This one touches a nerve, for sure. So as not to be left out, I’ll
sometimes go out with my colleagues from work to join in their “after work”
activities, but I’ll just stand by and watch while they “do”. You see, not to
go at all would be to get left out of the group and may even go so far as to
raise questions about my work commitment to “the team”. So I go. However, once
there, actually participating is physically impossible for my body, and
socially impossible for my pride. Ultimately, I end up standing by (or sitting
if I’m lucky enough to find nearby seating) and watching. Let me tell you –
that’s great fun, especially for the things that I used to love to do myself. This
is difficult to do at the best times, and outright challenging when I’m having
a “bad day”. In fact, sometimes I risk the possible condemnation of my
colleagues for not being a “team player” and just choose to stay home instead.
It takes real strength to stand by and watch while seeming interested and
supportive and join in the “fun” of the moment. Oh not to mention, there’s the
lying. “Why can’t you bowling; go rock-climbing; come skating; go on a nature
hike; go canoeing; etc. with us?” Well, if you aren’t ready just yet to reveal
your “secret identity” then you just have to come prepared with a rolodex full
of “excuses”. Hopefully you come off as believable and no one catches onto you.
Finally, there’s #7. I have started to try and practice
mindfulness and learn how to live in the present. I am grateful that I started
to read about this concept, practice it, and even take courses in it. It is a
critical tool to use in coping. One of the things that I try to do now that I
have learned about mindfulness and living in the present, is try to “worry”
about the future only long enough to practically and logically make plans as
any wise person would do, and then come back to the present without allowing
myself to linger. Of course, this is what I strive to do – not what always ends
up happening. For instance, one of the things I realized I needed to do was to
be practical about economics for the future. I am capable of working full-time
now and earning a decent wage. I understand that many people with my conditions
(I think the percentage is pegged at something close to 70%) cannot work. Since
this is a real observation which may become a reality for me, I need to get
smart about this and start saving now. I know that I can’t put money aside in
any special disability savings funds because according to the government, I’m
not disabled enough right now to need one. (How short-sighted.) In the
meanwhile therefore, I have to create my own solutions and pray that they’ll be
good enough when I need them. There are so many things in my life that I haven’t
done that I’d like to think I’ll live long enough to do. I’d like to buy my own
place to live, but realistically I don’t think I can live alone (cost
implications aside). There is too much to do in keeping a household that I
wouldn’t be able to keep up and go to
work with these conditions. Does this mean I need to live with someone else my
whole life, and if so, who would ever take that on? I need to be careful even
now not to linger in the future too much because that usually doesn’t end well
for me.
So suffice it to say, I found this article to be well penned
literature to which I easily relate.
