Do You Believe You Can Be Your Own Advocate?

Childhood psoriatic arthritis isn’t a laughing matter. It’s unfortunate that anyone should live with such a chronic, painful disease, but it can be especially taxing for children. Dealing with pain can be so difficult for someone who wants to be playing and keeping up with their peers. They put up with so much at a young age; I was actually hospitalized at age eight due to a severe flare that made my temperature dangerously high for days and put me in such extreme pain, to this day I would never wish it on my worst enemy.

Coping with the invisible, chronic pain

I think one of the biggest struggles anyone with invisible, chronic pain faces is just getting anyone to believe them! But it can be a particular challenge in the case of children. My mum had to fight for many years just to get me diagnosed- it took a number of doctors and hospitals to have anyone believe my pain was more than growing pains, let alone arthritis. Even once I was diagnosed, we still fought for support and proper care. When it wasn’t the doctors who didn’t believe a young child could be in so much pain and have a disease associated with older people, it was gym teachers, camp counselors, neighbors, school nurses, and even family and friends.

It’s hard. Not only on the parent who simply wants the best of care for their child, but also on the child. As a child, I remember being treated as if I was faking so often that to this day I am still hesitant to ask for help because I think I’m overacting. Teachers often thought I used my arthritis as an excuse to get out of gym class or class activities that involved physical activity.

The greatest lesson you can ever teach a child or teen with arthritis is “do no harm, but take no abuse.” They should never be ashamed that they have arthritis, or that they may need some extra help. They have a right to take care of themselves, whether it’s sitting out of gym class or getting a college dorm closer to their lectures. Health is a right, not a privilege and they should not be silent and told “no” simply because someone is ignorant.

Parents are the child's rock

Parents- you are your child's advocate. You will fight for them, and you are their rock. It's not going to be easy, but they need you and will learn to be strong from you. What you do for them now will teach them to advocate for themselves later. And one of the best thing you can show your child is that persistence and education has power: instruct those who do not understand and fight until you receive what is necessary for your child’s health. These two things were the most powerful things my mother taught me, and since a teenager I have been able to fight alongside her when school administrators and others told me an accommodation was impossible.

One day your child will be a strong adult who will become confident in saying “I need _____.” Teaching them to silently suffer when told no, or to not even ask in the first place, will simply make them feel ashamed of their arthritis and cause so much unnecessary pain. It will be hard for the both of you, but it will be well worth it. Your child is so strong for dealing with chronic pain, and they will only grow stronger with your support and encouragement.

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