Getting a diagnosis of any kind is scary. Getting a diagnosis of a rare, life-threatening autoimmune disease that you have never heard of is terrifying. But if you’re reading this, you probably already knew that.
Unfortunately, it happens all too often these days.
To some, finally getting a label for their condition can be a relief. With rare diseases like mine, Myasthenia Gravis (or MG), a condition that causes fatigue, muscle weakness, shortness of breath, double vision, and droopy eyelids, it can take years to diagnose due to the vagueness of symptoms. Finally receiving the validation that we have an actual disease and aren’t just crazy can actually make us feel better for a moment.
For others, just verbalizing the label for our condition can cause enough fear to set us into a medical crisis.
So what should the 50 million Americans with a chronic illness like MG do once they have a diagnosis?
1. Don’t panic.
Being faced with any health issue is hard enough but one you haven’t heard of before can be especially intimidating. Before you get too overloaded, STOP. Breathe. Go to a place you feel safe. Eat a little comfort food if you need to, and know that everything will figure itself out. It’s a lot to take in at first. Just do your best and let the rest go for now.
2. Get informed.
Read up on your disease and the typical treatments involved. It may look overwhelming at first, but you will find much of the information is repetitive. After a few articles you will get a feel for what you are dealing with and how it’s managed.
3. Mourn the change in your life but don’t get stuck there.
It’s easy to get lost in a victim state when dealing with disease. It’s ok to be sad that life will be changing, that’s a big hit. What’s not ok is for mourning to lead to prolonged depression. This will only exasperate your illness. With Myasthenia Gravis for example, the more upset I get, the weaker my body becomes. It’s important to process through your feelings, then let them go so they don’t make things worse.
4. Look up all your medications, including vitamins.
Don’t assume your doctor has a handle on all that you take. Research the side effects, contra indications, and cross reference what you can and cannot take together. Something as simple as Magnesium can put someone with MG in a crisis, know what you need to avoid. Also, many medications are taken a specific way, empty or full stomach, before bed, etc.
5. Keep a medical card in your wallet or on your phone.
Most cell phones have a medical id widget that can be accessed without a password. Make sure it is up to date with pertinent doctor information, allergies, emergency phone numbers and diagnosis. If necessary, wear a medical bracelet. It will bring peace of mind that you will be taken care of if something were to happen while you were out or alone.
6. Don’t take no for an answer with your insurance company.
They are in business to manage health care cost. Don’t be surprised if their first answer to any request is no. If it is something that you and your doctor think is necessary, keep going to another supervisor. If you don’t get the answer you are looking for, get your doctor involved. Insurance companies are not health care advocates. That is our job. There is always another tier you can go to in the insurance industry to get the answer you need. It just takes time and patience.
7. Learn how to manage expectations.
You may have plans to go somewhere but your body may have something else in mind (like sleep). It’s important to keep your life as normal as possible, but explain in advanced that you would love to go as long as you are up to it. That way you have an out without disappointing anyone.
8. Find alternative ways to pay for medication.
Medicine is expensive. Multiple medications can bankrupt if you aren’t careful. A typical protocol for Myasthenia Gravis can cost up to $10,000/month. Do your research! See if you can use generic when possible. If you are using a name brand, check with the manufacturer to help with the cost, many do. Mine pays up to $500/month towards my co-pay for just one of my medications. There are many prescription programs out there. Find the one that works for you.
9. Get support from your people.
Although friends and family are invaluable during a health crisis, it’s just as important to lean on folks that know exactly what you are going through. There are private Facebook groups for just about every disease you can imagine, you just need to do a search for yours. Rare diseases rarely have physical chapters in your area so this is a great way to get connected. Just remember that not all groups will be for you. They all develop a personality. Join a few, decide which one fits best and get to know those involved.
10. Don’t give up.
It’s easy to get discouraged, especially when you feel like you are all alone in a fight, and even harder when you don’t feel well. Remember, you are going through a moment in time. It will pass and you will be stronger for it. Never give up. Never, ever.
Lisa Douthit has been there and done that. After four different cancers and two autoimmune diseases, nobody can navigate illness like she can. In her book Wellness Warrior-Fighting for Life in Fabulous Shoes she discusses what it takes to be a Warrior in the healthcare industry. You can find more articles from her on her website lisadouthit.com or join her private Facebook group Wellness Warrior Tribe.
