Many people with chronic illness have stories about doctors who dismiss health concerns, chalk everything up to their chronic illness, or are told their illness is all in their head. When you just receive a diagnosis or are trying to get a problem diagnosed, it’s easy to forget about the power that you have in your medical journey. While doctors are experts in their field, you are an expert in your own body. The best working relationships come when the doctor and the patient work as a team. The quality of the doctor you find is all a matter of luck, but you can take some action to protect your health when you are struggling to find a supportive medical provider.
Do Your Own Research
If you have a diagnosis, the best place to start is looking at what the diagnosis means. What symptoms does it have? Are there communities or support groups for people with your condition? What are treatment options for the diagnosis? If you don’t have a diagnosis, a good place to start is to look into some plausible ideas that your symptoms could mean and tips from others who deal with your symptoms on how to deal with them. Before my neurologist diagnosed me with Functional Neurological Disorder (FND), I looked into ways to handle the pain of my tremors and to protect myself from some of the more violent tremors. While waiting for my appointment, I looked at Parkinson’s disease communities, Fibromyalgia communities, and explored the possibility of a diagnosis. I took steps to reduce my symptoms, like using a heating pad and putting a pillow behind my head when sitting on the couch. I also borrowed techniques from the autistic community to handle sensory overstimulation, as certain common noises in my house were hard for me to handle. While your research is no replacement for talking with a medical provider, it can show you opportunities to improve your life.
When you understand the diagnosis you have and do your research, it empowers you to understand when something is an emergency and needs emergency medical treatment. This is very important for some conditions, as things like chronic pain can mask more life-threatening symptoms. When you understand your diagnosis and the symptoms, you can look for things that show something else is wrong. Footless Jo posted a video on YouTube explaining how she almost didn’t go into the hospital for pain until she realized that the pain was outside of the normal range for her chronic pain. If she hadn’t understood that it wasn’t normal to hurt that much with her condition, she could have died as she shares in her video. Doing your own research allows you to understand when it is important to seek medical care and when you are likely to be turned away because doctors can’t do anything.
Keep Good Records
As a person with ADHD, this step is one that I struggle with. My FND causes me to have seizures that need to be tracked to understand their frequency and trends. When you live with a chronic condition, understanding the trends that create symptoms helps you figure out the actions to take to improve your life. An example is that I could track that I had more frequent seizures when we tried to change some medication for my blood pressure. When I had the seizure, my blood pressure spiked. With this and the fact that my seizures returned to a frequency they hadn’t been at for a year, I could use the data to help my doctors see that the treatment plan wasn’t working as we had hoped. When you keep good records, you can share it with your doctor to help guide your treatment.
The other aspect of keeping good records is that we can be oblivious to patterns until we track them. With my seizures, I found a trend where I was likely to have a seizure during a certain moon phase. With only about a seizure a month, I wouldn’t have noticed this trend if I wasn’t looking over my records and seeing the repeating dates month after month. I can now plan my life around a certain week, being miserable. I can work harder when I’m not at risk and take it easier on myself when I know I’m in a more vulnerable state. By keeping good records, I’m able to design my life to be how I want around my disability.
Learn How To Explain Your Condition
When you live with a chronic illness, you will need to explain your condition to someone else. Whether you have to explain it to family, a future medical provider, or a caretaker, it is important to be able to effectively explain what is going on. If you have a condition like FND, there are decent odds that you may need to work with physicians who have never heard of your condition before. I’ve learned to expect that most doctors haven’t heard of FND before and need me to explain it to them and how my symptoms affect their treatment plans. Being able to explain what your condition is allows you to share what symptoms are common, what things need more help, and what concerns may go with it. This is a big place where the research you do on your condition comes into play. When you understand and can explain what is going on, you are more likely to get the care you deserve.
Give Yourself Permission to Remove Unhelpful People
Some people will be jerks when it comes to your disability. Some think they know better than you and anyone else who may have agreed with the diagnosis in the past. This can be the case for both medical providers and family members. When this happens, you need to remove that influence from your life.
If it is a doctor, seek another doctor. Many people think doctors are smart, but I’ve found that I’ve had doctors tell me that my ovulation preventing birth control for my premenstrual dysphoria disorder was abortion. If you understand female anatomy at all, you can understand how stupid that claim is. This happened when I was looking for a new general practitioner between 2019 and 2022. It can take time to find the right fit, but that help is invaluable. Don’t settle for someone who is going to belittle you or give you bad information.
If the person is a family member, coworker, or friend, you can either make the choice to cut ties with the person, or on the less extreme end, you can stop talking with them about certain topics. Just like how you avoid talking politics with your conspiracy theory uncle at Thanksgiving, you can make your health care something that you don’t talk about with people who don’t support you. There are privacy laws to prevent your doctor from sharing medical information. You are under no obligation to share with unsupportive family members. If they can’t leave it alone or are in other ways making things difficult, it may be good to remove them partially or completely from your life. I have a not great relationship with my mom and so now I have a very superficial relationship with her. She gets to know about the big newsletter worthy highlights of my life but otherwise isn’t really involved. I found her to be very dismissive of everything I deal with and so I have built other relationships that help me validate and work through those issues instead of brushing them under the rug.
Be Open To Exploring Alternative Treatments
Sometimes we forget that everything in our health isn’t just about the state of our body. Depression and anxiety make health symptoms worse. Stress can cause heart attacks. It’s clear our bodies and minds are connected. When we open up to the idea that taking care of our health is partially taking care of our mind, we can see treatment options that can make a big difference, but that would likely not come up in a doctor’s appointment. I aim to do yoga every day to improve my mood, reduce my blood pressure, and move my body enough to make my fibromyalgia not stiffen my muscles but little enough to not overdo it. Pacing is a crucial concept that fits here. Sometimes our problem is that we aren’t pacing ourselves properly and our symptoms are manifestations of overdoing it. Explore the idea of ways to treat your symptoms that don’t involve Western medicine. Go to therapy. Meditate. Eat more fruits. Try things out to find what helps you feel better. When you feel better, you can lead a better life.
Do any of these tips stick out to you? Which have you tried? Which ones do you want to try? Let us know in the comments below.