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7 Ways to Educate Yourself to Live Better With Chronic Illness

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In the first year of appointments with my rheumatologist, I received a diagnosis and a drug treatment plan, as well as referral to specialists as needed, such as physical therapy or anti-inflammatory infusions at the hospital. However, I did not receive any information on the condition with which I was diagnosed. That, I had to research on my own.

From what I often read on chronic illness forums, this is a common scenario. Paradoxically, I often read the opposite on health websites – that we will receive information and education from our doctors on what ails us. I also often read well-meaning articles about assembling our health care team – doctors and health professionals who will communicate with one another – and that one of them will serve as the care coordinator. Sounds great! Where can I sign up??!

My own experience, and that of many other chronic illness patients, is that we, the patient, end up coordinating all of our own care, and educating ourselves about the diseases we have. It is a daunting task being your own care coordinator, educator and health insurance liaison, on top of dealing with a myriad of symptoms from chronic illness and the necessary self-care that goes with it.

If you live with a chronic illness(es) that affects your daily life, you already know it’s often a full-time job managing your own care. It sucks when you don’t feel well and you have to make phone calls and fill out paperwork to get the care you need and paid for by your insurance.

Here are some tips to empower you with knowledge on how to live with your diagnosis:

1. Find an association that advocates for the illness you have.

If you Google the name of the disease(s) you have, you’ll likely find an organization that provides information, research and advocacy for that particular disease. For example, I have ankylosing spondylitis, and fortunately, there exists a non-profit organization that provides a wealth of information on spondylitis, the Spondylitis Association of America (there’s also a spondylitis organization in Canada, and one in the UK as well).

There are also umbrella organizations such as the Arthritis Foundation, the American Autoimmune Related Diseases Association, both of which have a wealth of information. If you have a rare disease, check out the National Organization for Rare Disorders (NORD).

2. Check your drug interactions.

If you have all of your prescriptions at one pharmacy, ideally your pharmacist should be able to tell you about potential interactions between the drugs you take. If you’re like me and you have a few “as needed” prescriptions filled at a local pharmacy instead of mail-order, then it’s up to you to keep track. I use MediGuard, a free service that allows you to enter in all of your prescription, over-the-counter medicines and herbal supplements to check for interactions. If you create an account, it will save your medications list and periodically send you an email reminder to update your list.

3. Find an online support group.

I participate in several online discussion forums and social media groups. Some are specific to the diseases I’ve been diagnosed with, and some are general chronic illness discussions about issues relating to being chronically ill. Online support groups are a great place to ask questions
and share your experience with others.

There are plenty of general chronic illness online forums and social media groups, and many for specific diseases. The website ButYouDontLookSick has a forum index page with over 70 topics on various aspects of chronic illness. Another website that has been around a long time, Healing Well, offers a portal to many forum discussions on a variety of diseases and conditions.

4. Check to see if your health insurance has a chronic disease
management program.

About five years after diagnosis and a lot of research on my own, I was contacted by my health insurance asking if I wanted to sign up for a case manager through their chronic disease management program. I signed up and had a weekly phone call with a case manager for about a month, but it was all information I’d already figured out on my own. This would have been really helpful right from the beginning! They can help with insurance claims and appeals, provide nutrition information, monitor your moods and health changes, help you set goals and more.

5. Get help to tailor an exercise plan.

There is a ton of research now showing the benefits of exercise not just for healthy people, but for those with arthritis and many other health conditions. My physical therapist discussed the importance of cross-training: doing a different kind of exercise two to three times a week, and not the same thing every day. I find this advice spot-on in preventing further aggravation or injury to arthritic joints.

The key is to do some exercise or movement consistently every day, but don’t overdo it and set off a flare. The Arthritis Foundation, for example, offers some excellent tips on exercising within your own limits – I especially like their online tool called “Your Exercise Solution.”  Your doctor, physical therapist and a disease-specific support organization should be able to offer solutions for the illness you have.

6. Evaluate your diet for inflammationcausing foods.

Initially, I didn’t think diet was that important, but I’ve since learned that good health starts in the gut. We need to be able to digest and absorb the nutrients from our food to function our best. Some of the worst offenders which cause inflammation are sugar, saturated and trans- fats, refined white flour, monosodium glutamate (MSG), gluten and casein. If you have arthritis, for example, check out the dietary recommendations from the Arthritis Foundation.

7. Follow the research for your disease.

You know your body better than anyone, and are motivated to receive the most effective treatment. Although doctors should keep up on the latest research, they don’t always do so for everything. Look to reputable research sources such as medical journals, research studies available online through websites such as PubMed, and websites associated with reputable health centers like the Mayo Clinic’s Patient Care and Health Information online.

I hope my experiences will help you begin to navigate your own ongoing self-care with chronic illness.

Remember you are not alone. There are many of us living with chronic illnesses, and we support one another through blogs like The Mighty, through online forums and social media. Welcome to the club!

This post originally appeared on Chronically Natural.

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Photo via undrey on Getty Images

Originally published: January 8, 2018
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