I have an invisible illness. Actually I have a few.
Whether you believe it or not is of no concern of mine.
How you choose to interact with me is your business.
How I react or respond to you, is mine.
And remember, while I may be sick, I am not weak.
I am a courageous and compassionate warrior.
And everyday, I go to battle
Fighting a war you could never understand.
Carrie Ann Inaba
“The Invisible Warrior”
Having autoimmune syndromes like Sjögren’s Syndrome or Fibromaylgia, or Lupus, or invisible illnesses like Iron Deficiency Anemia, Depression or Anxiety, does not make for an easy life. Let’s just get that out of the way. It’s hard enough to function in life without the added chronic fatigue, confusion, pain, discomfort and the daily inconveniences of the dry eyes, joint pain, difficulty swallowing, the reactions to the sun, and the sudden flooring exhaustion.
Not to mention there are also the effects of medications, whether it be swelling or weight gain or loss… or just the fear of what it might be doing to your system in the long run.
They say that life is a bowl of cherries. But when you have autoimmune conditions, it becomes a universe of never ending challenges. However, according to the eastern philosophy of yin and yang, for every negative in life, there exists a positive and for every moment of darkness, there is light. And the more we can focus on the light, we will live in the light. But it takes effort, determination, and courage to bask in that light and find the gifts.
The biggest gift of having autoimmune or any invisible health issues is that because of the strange and never ending rollercoaster of challenges that arise with each day, and the lack of understanding that often comes with these strange symptoms, from those around us, we feel isolated in our struggle. I know that doesn’t sound like a positive, but in that isolation, we become the ONLY true expert. We are the only one going through this struggle, the only one that can determine our pain level, and what works and what doesn’t. The doctors are for information. But decisions are our own. Feeling the relief and the discomfort are ours to experience alone. And we have to find ways to stand strong and become our own best advocate for our own health. We become the expert on ourselves and we become the cheerleading team of one for our own healing. We also become our most compassionate nurse. And that comes from the fact that we are the only ones experiencing our reality and to get through it, we have to become the hero of our own life. So that’s one of the best gifts that invisible illness has given me. The opportunity to recognize with clarity that I am the hero of my own life.
For years I tried to fight the fatigue, I tried to push through the pain, and I tried to ignore the discomfort. But eventually it becomes to much to ignore. And the reality is it can be debilitating. And in my journey, I had to make peace with that.
I had to surrender to my health and I had to let it “win”. Which at first made me feel like I had lost. And that was painful. I had never thought of myself as a loser. I was a winner, I worked hard and I fought for what I believed in and I usually always found a way. But that changed with the autoimmune conditions. I couldn’t “win” my battles with the pain or fatigue or any other part of it. So I surrendered. I decided to see myself as a “sick person” a person with limitations. It was a full redefinition of myself and how I interacted with the world. I allowed myself to have all my emotions about it as well. I was mad. I was sad. I was angry and frustrated. I felt sorry for myself. But mostly, I was scared. I was frightened for my future and what would happen to my independence and career.
With the acceptance of my diagnosis, I started to live my life in ways to avoid causing any flare ups or panic attacks. Life became more of an avoiding of life than an actual life. And my life became very small.
I lived like that for years. Afraid, and avoiding the things that could cause me pain and more pain. Which also meant I was avoiding life. I had to choose carefully what I wanted to do because any exertion or excitement would come at a price. If I did something on a Monday, I knew I’d be out of commission for a few days after that. I was extremely grateful that I had my job on Dancing with the Stars because it was something I could do even when I was really struggling with my health. The schedule worked for me and I have always been so extremely grateful for that. I know that some people lose their jobs when they get these conditions. I read about a woman who ran a huge corporation Like a BOSS. And who was reduced to barely being able to make coffee for herself with out needing to lay down.
These limitations really challenge your self esteem. In a world that praises “succeess” and being busy, “getting things done” not being able to do what you want, when you want to, destroys self confidence, especially for those Type A personality types. But as I said earlier, there are some gifts that come with that as well.
Once I recognized I had to let go of the image of being “able” and “strong” in the way I had been used to, I discovered new things about myself…And I learned how to actually accept myself in each moment as I was. And sometimes that meant I was broken, in pain, confused, struggling, weak, and all these words I didn’t like to associate with. However, I made peace with all of these aspects of myself. And I learned to accept all the different shades of myself. I am all of these things and the health challenges put a spotlight on many of these characteristics i didn’t want to accept and forced me to become friends with them. And for that I am grateful.
Becoming the hero of my own life.
Accepting the parts of myself I didn’t want to and making peace with all sides of me.
These have become two of the greatest gifts of my health journey. And for these gifts, I am grateful. And it is my wish for you to find them as well in your journey if you struggle with health issues like mine.
I want to also share a list of some practical things I have learned along the way for my fellow Invisible Warriors out there. I have received many requests for a list of the things I do to take care of myself. So I have started a list. This is the beginning of this list. i hope you find them helpful. Remember, i am not a doctor. And I’m not saying these will work for you. They are just what I found that worked for me. And I am sharing them with you to inspire you to find the choices that work for you. Each journey is unique.
I read every book and every article I could find about how these autoimmune conditions affect your life. I joined support groups and was studied the people who had already been down this path and had shared their stories. And I was and am still so grateful for the courage of those people who shared their stories. That is why I share mine because when I heard of how others had struggled through their own diagnosis and found their new normal, I felt so much less alone and not crazy.
• It took me a few years of constant experimenting and adjusting to find what worked for me….and I wanted to share some of the things that have helped me get to where I am now.
You must be the last and final word in all health care choices. Your doctors, and specialists will hopefully give you good advice, and guidance, but remember, a lot of these doctors do not have the conditions they treat so they treat from an outsiders point of view. YOU are the one that must live with the consequences. You must be proactive in your treatment. You are the expert on you.
• You should avoid pain. I was taught after caring for my Mom and Dad, through their cancer treatments, that it is important to not get into a pain cycle. Especially for those with autoimmune conditions. If we get into a pain cycle our whole system may go into a flare up snd we all know THAT is not good. My approach to pain was always to kill it swiftly. My Spinal Stenosis caused tremendous pain those first few years. I’d have to get tons of steroid shots into my back and neck and shoulders to keep me going. But if I felt pain rising, I would take the prescribed pain medication and muscle relaxer the night the pain started and lay down with proper alignment and usually the pain would be gone on the morning. And then I would no longer need the pain medication.
On occasions when I didn’t take anything and tried to brave the pain for a few days, it would always take longer to get out of the pain. So, my motto for pain was to honor it and get out of it as quick as possible. And by doing that, I was able to avoid the risk of addition to the painkillers becauseI didn’t have to take them for extended periods of time. This may not work for you and addiction is real so please be careful with any pain medication or any medications that could be habit forming.
• When brain fog hits, let people close to you know. They can help and then if you are being “strange” they will not be upset with you.
Schedule rest. I always use a month view calendar so I can see everything all at once. It allows me to know my high exertion days and my peaceful days at a glance, and plan rest before and after high energy /exertion days. I usually know I can’t do too many high stress, high exertion days in row. If I do, I know I’ll need a few more days when it’s over to recooperate and find my way back into balance.
• Do not alienate your friends. You will need them. And if they are your true friend, they will want to help you. You will also find out who your real friends are during this process and that too is a gift unto itself. Also, for the people who tell you how you should manage your health, remind yourself that they probably could not walk a day in your shoes and forgive them for their lack of understanding. They mean no harm, they just lack a certain understanding. As we ask for compassion from them, we must also give them compassion.
These are my basic survival tips for living with the autoimmune conditions.
The trickiest thing about these autoimmune conditions is that they come in pairs or groups… and they are often ambiguous and don’t show up the same way every time. So you have to be fluid in the way to handle your wellness approach. You also have to keep checking in with yourself, and stay in tune with happening. It’s a true work in progress. And that is yet another gift. You start to notice YOU. You start to understand how what you do today can affect how you feel tomorrow. You are no longer going to push yourself to the point of exhaustion. You will create healthier boundaries and you will know your body better than you ever have. And that is part of the gift of the autoimmune condition. You will pay attention to you and how the world affects you. Which will help you to create the best life possible.
There is so much more I will be writing on this topic, but I will end here today. Please share your comments below so that I may learn how some of you handle your health and wellness. Or, so I can see how you like the blogs I’m posting.
Thanks for being here with us today.
