Come in and Meet Graves’ Disease–
Graves’ Disease is one of those hidden diseases. Which means that all the information found in scientific articles still doesn’t convey what is really going on inside the person who has it. In fact, Graves’ Disease is so hidden it’s hard for even the experts to diagnose it. Even worse is that empathy from friends and family is illusive because the disease is so invisible to everybody. Therefore, how do people with Graves’ Disease ever feel understood? That’s the problem. Unfortunately, and sadly, it’s not so easy.
Walk Around in My Skin
I’ve been marketing healthcare products to patients and doctors for over 25 years. My holy grail has always been to understand my patients as if I were the patient myself. My mission has always started with this powerful quote: “The only way you ever understand a person is to climb in their skin and walk around in it” from Harper Lee’s classic novel “To Kill A Mockingbird”.
Power of Letters in Building Empathy
So, if you really want to understand someone, how do climb in their skin? One easy way is to start a simple technique like writing letters. Have you ever received a letter from your disease telling you what it’s doing to your body? Ironically, I received this letter after I was diagnosed with Graves’ Disease. The bugger knew that I knew and decided to announce itself. Graves’ disease jumped out of my computer as soon as I started searching around in Google. It was too creepy. It felt like it was in my mind and in my skin!
After over 25 years in marketing, I know the power of letters in building understanding and empathy. So, I’d like to share this letter I received from Graves’ Disease when I was first diagnosed. Read on. Climb in my skin and walk around in it if you want to have an inkling about what Graves’ Disease is really like.
“A Letter to Me from Graves’ Disease”
- Hi. My name is Graves, and I’m an invisible autoimmune chronic disease that attacks your thyroid gland.
- I am now Velcro…ed to you for life.
- Others around you can’t see me or hear me, but YOUR body feels me.
- I can attack you anywhere and anyhow I please.
- I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
- Remember when you and energy ran around together and had fun?
- I took energy from you and gave you exhaustion. Try to have fun now!
- Love sleep? I can take good sleep from you and in its place, give you brain fog and lack of concentration.
- Want sleep? I can make you want to sleep 24/7, and I can also cause insomnia.
- I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
- Feeling puffy? I can also give you swollen hands and feet, swollen face and eyelids, swollen everything!
- Oh, yeah, I can make you feel very anxious or very depressed, too. I can also cause other mental health problems.
- Those clumps of hair? That’s me! I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me!
- Frustrated with your scale? Me again. I can make you gain weight and no matter what you eat or how much you exercise. Trying to lose weight but scale won’t budge? That’s me again keeping that weight on you. But I can also make you lose weight. I don’t discriminate.
- Some of my other autoimmune disease friends often join me, giving you even more to deal with.
- If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons:
- That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) Maybe you have a family history of me. Whatever the cause, I’m here to stay.
- I hear you’re going to see a doctor to try and get rid of me. That makes me laugh! Just try. You will have to go to many, many doctors until you find one who can help you effectively.
- You will be put on the wrong thyroid meds for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
- There are so many other ways I can make you sick and miserable, the list is endless – that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That’s probably me.
- Can’t get pregnant, or have had a miscarriage?
- That’s probably me too.
- Teeth and gum problems? TMJ? I told you the list was endless.
- You may be given a TENs unit, get massaged, told if you just sleep and exercise properly, I will go away.
- You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the doctor how debilitating I am and how sick you really feel. In all probability you will get a referral from the ‘understanding’ (clueless) doctor, to see a psychiatrist.
- Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
- Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.
- Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “normal” person and can’t remember what you were going to say next. You’ll be told things like, “Oh, my grandmother had that, and she’s fine on her thyroid pill” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE’S taking, doesn’t mean it will work for you.
- I’ve been trying to keep this next part quiet, but since you’re reading this you already know.
- The only place you will get the kind of support and understanding in dealing with me, is with other people that have me. They are really the only ones who can truly understand.
I Am Graves’ Disease.
Try Writing a “Dear Graves’ Disease” Goodbye Letter
After reading this letter, I hope you’ll write your own letter to Graves’ Disease telling it to move out! Tell Graves’ Disease about all the help you are getting from other people with Graves’ Disease who truly understand you. Tell it you’ll use every proven Life Hack you’ve learned to put Graves’ Disease in its place: In Remission. Remember the power of letters. Keep writing. It will help.
Live Well with Zest,
Written by Bev Hope