Let me set the scene for you. It’s 2015, I’m leaving the Olive Garden and my phone rings. The nurse on the other end of the phone tells me I have Hashimoto’s Thyroiditis. Okay, don’t panic. A quick Google search says,”Hashimoto’s disease, or Hashimoto’s Thyroiditis, is an autoimmune disease that damages the thyroid gland. It is the most common cause of hypothyroidism (underactive thyroid).” Okay, what does this disease do to me? Let’s look up some possible symptoms:
- Fatigue and sluggishness
- Increased sensitivity to cold
- Pale, dry skin
- A puffy face
- Brittle nails
- Hair loss
- Enlargement of the tongue
- Unexplained weight gain/weight loss
- Muscle aches, tenderness and stiffness
- Joint pain and stiffness
- Muscle weakness
- Excessive or prolonged menstrual bleeding
- Memory lapses
Oh, well that sounds a bit more worrisome… What now?
To start, my doctor recommended I cut out gluten and dairy and start taking B12, daily. It’s now been a little over five years since my diagnosis, and I have cut out even more foods and I take a whole array of vitamins every day. After seeing a few doctors, doing tons of my own research, and being an active participate in online support groups, I know now (mostly) what I need to do to feel my best. To fully explain what this disease does to me and what I have done to better my life, in spite of this disease, I would have to write an entire other blog; so we are going to just touch the surface today! This is a journey, but I am now on the road to remission!
This disease, of course, started a whole life change, which was an incredibly hard adjustment. The hardest part of it all? Securing a support system. Family and friends didn’t understand at first; how could I expect them to when I hardly understood it myself? It is truly hard to understand or empathize with something until you have been through it personally; that is an important thing to remember. It is, however, possible to have compassion nonetheless.
Every time my disease was doubted I would over explain and go into detail about all of my symptoms and doctor visits. I’d clarify what I had researched on my own, as well as the fact that most doctors simply don’t understand it enough either. I told them about the various life changes that were helping me, emphasizing the fact I know these things are actually helping me because I no longer need to nap in my car everyday during my lunch break.
“You’re not sick. You don’t look sick. You should be glad you aren’t sick. What you have isn’t that serious…”
There are so many things I could say in response to the dismissive comments people say to me, but, to be honest, I am usually too hurt and dumbfounded to say anything in the moment.
So here’s what I wish I could say and what I wish everyone around me to know about having an autoimmune disease:
- “I am sick. Please don’t tell me that I’m not.”
Whether I have an illness that you understand, or see, you do not get to determine whether my illness is valid. Boom. Simple as that.
- “Just because I don’t look ‘sick’ to you, doesn’t mean I am not sick.”
I wear a smile as a mask and put on a damn good show, but on my worst days you don’t see me. You don’t see the days I don’t eat until after noon because I’m too nauseous to feel hungry. You don’t see the days I brush my hair and big clumps fall out. You don’t see the days I am curled up in bed all day, feeling freezing regardless of actual room temperature, with no motivation to get out of bed. You don’t see those days, but that doesn’t mean they don’t exist. On the other end of that spectrum, just because I am having a good day does not mean I am all better or was just faking before; it simply means I am feeling good today.
- “I don’t want to be sick.”
My mental health suffered (and still does!) from being dismissed so many times and for not being able to live a “normal life”. I have had to give up so many things just to live as “normal” as possible. I would give anything to not be sick, because I seriously don’t want to be. I don’t want to plan every day around my disease. Pizza for breakfast, normal cake on your birthday and not having to pack food everywhere you go is preferable, believe me.
- “I know some people have it worse, but that doesn’t make my struggle invalid.”
No it is not terminal. I am taking care of my illness so it should never become something dangerous. Do I still struggle daily? Yes. When someone breaks their finger do people say, “Your whole arm isn’t broken, you’re fine”? No, because people understand that even a small fracture still hurts! My hair doesn’t fall out as quickly as some and I am able to work and bathe myself without assistance. Yes, I am so very glad I do not have it as bad as some people with Hashimotos or other thyroid conditions, but that does not mean my illness should be dismissed.
So if you are someone who has had similar struggles, this next part is just for you. You know how you feel. You know everything you’ve had to give up. You know what helps you feel better and you know your limits. You don’t have to rationalize anything to anyone. You have spent so long becoming okay with your new reality, it is not your job to make sure everyone else is okay with it too. You are not alone in your struggle.
To those that support us, fully and unconditionally: we are eternally grateful for you!
Marketing Coordinator at the Psychiatric Wellness Center
Volunteer Secretary with the American Foundation for Suicide Prevention
Mental Health Advocate
Gianna De Keles, MS
Kayla Irene Photography
Psychiatric Wellness Center (Bakersfield, CA) – (661) 431-1555 #3 (New Patient)
Crisis Textline (Crisis Text Line is a global not-for-profit organization providing free, anonymous crisis intervention via SMS message) – Text “Listen” to 741741
National Suicide Prevention Hotline – 1800-273-8255