Five Tips For Dealing With Chronic Disease

1. RA helped me to develop a sense of optimism

When my health changed for the worse I became depressed about pain and fatigue, and was even more stressed and unhappy when I got a diagnosis of Rheumatoid Arthritis (RA).  I remember clearly that it was summer, and I was told to stay out of the sun because of my medication.

For some reason, my mind went back to my mother - she used to enter contests at one point when we were kids. I thought I'd try this home made solution! I started to enter and once I got started it was great to be looking forward to exciting calls, messages and letters. Gradually that positive feeling occurred more often.

I wish I could uncover the secret of being this happy

2. You need to be able to find things out and put things together.

When you suddenly find yourself with a health problem you have barely heard of, it is worth learning at least the basics about the illness and treatments. In the case of RA the process of getting effective care was too slow for me. If I had known more about the medications I would not have had to weigh the options and start a new treatment months later when I saw the doctor again. Being ready would have helped me to feel better sooner. Knowledge affects your outcomes.

Picture taken at Paul B. Helliwell Patient & Family Library at Toronto Western Hospital. You need to have your organs together

3. You need help

Hopefully not this level of help

Your primary care doctor is the person you see most often. Do the best you can to find someone who will work with you. With a chronic disease you can learn a lot and get help from other types of health professionals too.

With RA I really value the help of the rest of the team I have put together over the years - an Orthotist to make the orthotics that keep me from limping, an Occupational Therapist to tell me how to save my joints and find devices and ways to make life easier and a Physiotherapist to oversee the physical areas that the rheumatologist never seems to mention.  In fact my physio cheered me on for years as I struggled with disatisfaction. It really helps when someone keeps saying "You're doing great."

4. You have to be persistent to get good treatment

I always hope for a great treatment that will work fast - like a bolt of lightning

Good treatment is not likely to find you. You have to search it out. If your first  doctor is wonderful, fine, but RA lasts a lifetime, so it's best to find a specialist you can trust, and also one who has up-to-date knowledge of treatments. Even if you want more conservative treatment at least the best doctors know which of the milder drugs are most likely to improve your health.

An example of persistence. My Doctor has to fill out this many forms to get people on a biologic drug.

5. You need support

They are holding each other up

Your family and friends (some of them anyway) will be good sources of help and support for you during your ups and downs with RA, but I'd say there's no substitute for a support group. At first I was unable to find an in-person group; now I have discovered one through volunteering for arthritis related causes.

My support group of choice is online. I've been in the same one for 15 years and we have grown very close. When you're worried and don't want to make your friends and family even more anxious the best people to talk to are others who have been through it before. They are invaluable to help you get through tough times.

On Twitter you can find people with RA using #rheum as a hashtag, or you can go beyond just talking to others who match your illness and try to make help others and change things that are wrong or less than perfect in health care. Helping others is one of the best ways for people with chronic disease to start going beyond their illness. Do you know the real secret of the self management courses you see?  It's in just deciding to take it - that's a first step.

Once you join they teach you how to set goals that will work for you. Even if you decide not to set a goal some weeks it still does you good because you are deciding what you want to do, not your disease. So there is my theory of self-management!

Is Seeing the Doctor 400 Times Too Much?

This is a cautionary story of how it can be expensive in time as well as money to know too little about your own health and treatments.

The 400 visits in the title is what it is because for seven years I went to the doctor's office for weekly injections of methotrexate. Year after year I dealt with snow, rain, ice storms, paying for parking, dealing with the difficult receptionist and wasting time waiting. The only positive side is that I now know my doctor very well.

After that endurance contest I can say that for me the biggest advantage to being involved in a clinical trial was a conversation with a trials nurse who said "Why aren't you doing the injecting yourself?"  A classic "Had I But Known" was my answer.  If I had had the faintest hint that I could have been doing it on my own I would have.

This author was one of the queens of the HIBK (Had I But Known) genre

That marked the last time I had someone else take care of my injections. Now with social media, people who are connected to other patients can find that answer much faster than I did.

Thinking of how many hours I wasted and how much money it cost the health care system was enough to turn me into an advocate for change. This number of unnecessary visits is a healthcare horror story. The lack of a short conversation not connected with direct symptoms, and a patient who didn't know enough to question the status quo produced this result. 

Now I aim to be an empowered patient capable of managing most of my care with a minimal amount of help.
After making a major long term effort to educate myself, to learn more about my health issues and to find out how the healthcare system and people in it work I can manage this with some help and support. 

Patient centered care

A source of support I found in addition to my doctor is patient communities. They have been a good source of reliable information. One group I've been in for ten years has many experienced patients whose stories are similar to mine. As an example when I asked them about effective treatments for mouth sores they had good ideas. I suggested one of these to my doctor and although it was new to her after looking it up she prescribed it - a great choice and it worked almost overnight.  It helped me to feel that I am now able to collaborate with my doctors. 

The old me would have meekly gone home and tried the mouthwash she initially suggested that was actually contra-indicated because of my Sjogren's Syndrome. That would have led to a repeat visit. 

Things are working well now but I fear starting over when my doctors retire (all of them are over 64) and I have to build new relationships. 

Authentic Beatles Pencil case (When I'm 64)