When you tell someone you have an Autoimmune disease they usually reply with:
• “But you look fine!”
• “It’s all in your head!”
• “Oh, we’re all tired these days!”
• “Have you lost weight? You look great!”
• “How did you catch that?”
• “It’ll be alright in the end”
• “They can fix you, right?”
• “Take some herbal medicine to boost your immune system!”
• “My friend’s cousin’s partner has it and he’s fine!”
• “But you’re too young to have that!”
Does this sound familiar?
“But you look fine!”
Many Autoimmune diseases are invisible. That means we can look perfectly fine. We can even look fabulous! But a lot of the time we feel really rotten. If we were to somehow turn our bodies inside out, it would show a whole different picture of inflammation, pain, joint tenderness and so much more!
We are battling through fatigue on a daily basis. It’s like a routine when we leave our homes to throw on our warrior faces as common as we put on our shoes. It’s just easier sometimes. We usually possess the super human ability to act like a ‘normal’ functioning person.
“It’s all in your head!”
Autoimmune diseases have a bad reputation! Autoimmune Warriors will need to have a battery of tests done just to confirm that they do in fact have an Autoimmune disease. Some Warriors have had to prove their symptoms. Some have had to push for a diagnosis. Most of the time when we tell someone we have an Autoimmune disease, they have no idea what we are talking about!
Because we look fine a lot of the time, people assume that we are fabricating symptoms. Those who do not fully understand our conditions can often believe we are “faking it. Autoimmune Warriors often need to cancel out on plans at short notice or have limitations as to what they can manage. I don’t even remember the last time I pulled an ‘all nighter’.
We don’t live like this because we are lazy! We just have no control over how we are going to feel from one day to the next.
“Oh, we’re all tired these days”
We hear this all the time. “You just need more sleep”. No amount of sleep could fix the tiredness we feel. If only it was that easy! It is hard to explain fatigue to someone who has never experienced it. The best I can describe is that fatigue is an ugly beast of force that lies deep in our bodies, pulling us down and dragging us back. Sometimes you can kick it off, sometimes you just have to roll with it.
“Have you lost weight? You look great!”
Our conditions can often cause fluctuation in weight for us. Unfortunately for me, it’s usually weight gain! The shame of someone asking when your baby is due! The dreaded side effects of medication and symptoms of our conditions!
Well-wishers with all the best intentions can assume that if you have lost weight, you must be feeling really good! It’s just not the case too often. “What diet are you on?” It can be hard to explain to someone that weight loss for some of us can mean serious illness.
“How did you catch that?"
Autoimmune Warriors can often be asked how they “caught” their Autoimmune diseases? You cannot catch an Autoimmune disease from another person like you can a virus or bacteria. Autoimmune diseases are not spread through sexual contact or by blood.
“They can fix you, right?”
There is no cure for Autoimmune diseases. Once you have it, you have it for life! Some of us can go into remission (a period of time where we are symptom free) which can last days or even years. But we cannot be ‘fixed’.
“Take some herbal medicine to boost your immune system!”
Well-wishers will often hand out advice about products or lifestyle changes which they believe will ‘cure” us. “Here, take this magic bean!”. This advice may be helpful for treating our symptoms, but we cannot be cured. At times it feels like every healthy person knows entirely how to “fix” my conditions.
Because our immune systems work in reverse, boosting our immune systems with herbal medicine or natural therapies can cause us to flare. Most of us are on immune suppressant medications. People find this hard to believe.
“My friend’s cousin’s partner has it and he’s fine!”
We often hear stories of other Autoimmune Warriors who are fighting this battle. Or of other Warriors who have lost their fight to it.
Every Autoimmune Warrior is different. We all have individual symptoms and diagnoses, which effects each of us differently. Autoimmune diseases also vary in intensity. One Autoimmune Warrior’s battle can be completely different from another Autoimmune Warrior.
“Be kind, for everyone you meet is fighting a battle you know nothing about” – Wendy Mass, The Candymakers.
These all sound familiar right?
What are some other phrases you hear when you disclose your conditions?
Please join in and type them in the comments below……………….
Oh so true and sometimes it is a family member that just been diagnosed and they are so much worse than you are but they will beat it because they have a better mind set