Judi Rising and her daughter Tracey Barnes know a lot about advocating for people living with autoimmune diseases. Judi is co-founder of the Autoimmune Advocacy Alliance (A3 Alliance) and has spent years educating local and statewide communities about autoimmune diseases. And Tracey, who has lived with multiple sclerosis (MS) for 11 years, often shared her advice on self-advocacy for autoimmune patients as a former spokesperson for Biogen. Twenty years ago, however, they knew next to nothing about autoimmune diseases.
Judi and Tracey first learned about autoimmune diseases when Tracey’s brother Pat was diagnosed first with Hodgkin’s disease, then with idiopathic thrombocytopenic purpura (ITP), a rare autoimmune blood disease. Six weeks after his ITP diagnosis, Pat passed away. “We had heard the words ‘autoimmune disease’ prior to this, but had no details of any kind and of course no understanding of the impact it could have,” Judi says.
After Pat’s death, Judi and her husband Dick knew they had to spread awareness about autoimmune diseases. They founded “Pat’s Fund,” to educate others about autoimmune diseases, which grew into the A3 Alliance with the support of Benaroya Research Institute at Virginia Mason. Tracey’s own journey with MS has taught the entire family about what self-advocacy as an autoimmune patient looks like, as well as how family and friends can support loved ones living with one of these 80+ chronic diseases.
We recently sat down with Judi and Tracey to hear their advice on how to advocate for yourself and others living with autoimmune diseases.
Tracey, what does self-advocacy mean to you as a patient living with an autoimmune disease?
Tracey: Self-advocacy begins with your attitude and how you look at things —attitude is absolutely everything.
What I’ve discovered is that people who’ve been diagnosed with MS go one of two ways. They either say, ‘My life is over and I’m going to give up right now. I don’t care. I’m angry, and I’m scared.’ Or, they say, ‘Okay. This is something that’s in my life, and I’m going to do the best I can to deal with it and move on.’
If I’m having a bad day, I sit down and say, ‘This is what you have—but look at all your blessings, and look at all you’ve been given in life. Are you going to give into this?’ I do not allow myself to go down the slippery slope of thinking about, for example, the fact that I don’t have any children and don’t know who will take care of me when I’m older. Instead of doing that, I think it's very important to focus on a few things you know will get you out of the darkness.
Self-advocacy is also a process of asking questions and learning. When you don’t understand something about your disease, your medication, or your symptoms, ask the question again.
What does self-advocacy look like at the doctor’s office?
Tracey: No question is dumb—don’t be embarrassed to ask questions. Don't think, ‘The doctor is going to think I'm dumb, or I'm going to hurt their feelings.’ This is your life. In terms of anything you don't understand, which is going to be 90 percent of what the doctor tells you, write it down or ask about it. It is so vitally important. For example, when I was first diagnosed, I was given the option to begin taking one of seven or eight different drugs. I didn’t feel prepared to make a choice, but I did. Little did I know the drug that I should have gone on was one that had a huge risk factor—so I had just dismissed it. If I had chosen that drug, I wouldn't be in the situation I'm in right now [walking with forearm crutches]. If I'd known what I know now, I would've said to that nurse, ‘I don’t get it, I don't know what drug to use. You've got to help me.’
Judi: If you have a question that your doctor can’t answer, you can also ask for a referral to a specialist or a system with specialists, like Virginia Mason or the University of Washington. We hear story after story about people who are misdiagnosed, sent to the wrong doctor, or not taken seriously by their primary care physician. Don't be afraid to say ‘I appreciate everything that you've told me, and I'd like to hear from someone else. It's nothing against you, I just want to hear a second opinion.’ There's nothing wrong with that.
Tracey: It’s also really important to bring someone with you to your appointments. At one point, I took my mom or my husband to all my appointments because they both had a better understanding of the disease, and I wanted a second set of ears. When you start to feel rushed by the doctor, you need to say, ‘I'm feeling rushed. I don't understand this. When or who can I talk to for more information?’ It's so important.
How do you build and leverage support networks?
Judi: With regards to building community, support groups look great on the surface but can be really difficult to keep positive. When people don’t have anyone to share their story with, they see a group of people who understand what they’re going through, and sometimes it turns into a gripe session. You have to have someone in the group who helps keep the session positive.
I’ve seen that oftentimes, friends can be even better supporters than family members. It's perfectly fine to make your support system your friend. If family doesn’t work for you as a support system, seek a friend because they may be more understanding and supportive than your family will. The breakdown of support within families is common, not uncommon. Sometimes, family wants to pretend that the disease is not there.
Tracey: For example, I have a friend who I can call and say, 'Will you come down to the house and just let me talk?’ And she does. She’s a great friend.
What would you tell people who have been recently diagnosed?
Tracey: I wish there was a way to communicate to people who are newly diagnosed that there is help out there. You can be very positive and keep going in your life. I don't think that is as well-known as it should be.
Judi: One of the really scary things for a lot of people when they’re first diagnosed is that they go online and get the message, ‘no cures.’ And unfortunately, in most people’s minds ‘no cures’ equates to incurable.
That really isn’t true, in the sense that most autoimmune diseases today do have treatments that can pretty much stop a disease from progressing. If you get on the right path, they can be stopped. And that isn’t exactly the same as incurable.
There are some internet sites that give good information, like Johns Hopkins Autoimmune Research Center’s website, and the Cleveland Clinic’s website as well as their page on understanding autoimmune diseases. In addition, there are some very good books to read like Living Well with Autoimmune Disease by Mary J. Shomon, and The Autoimmune Epidemic by Donna Jackson Nakazawa.
Most importantly, once a person has a diagnosis and a treatment (if available) they should begin to talk with others who have the same disease to find out how they deal with their issues for a better living experience. It is very important for people living with autoimmune diseases to reach out, share, and discuss their experiences.
This interview has been edited for length and clarity.
September 28, 2018
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