I recently joined a couple of Facebook groups focused on specific health topics. My hope was to find help and encouragement for managing these difficult conditions, but what I’ve found instead is a whole bunch of people who are devastated and at their wits end.

Most people do not understand how impossibly hard it is to live with this kind of chronic sickness. Someone made the comparison today to cancer – not to downplay cancer, cancer is horrible. When someone has cancer, people understand that, doctors understand that – so the patient is treated with compassion and love.

When someone says they have Lyme & tick disease, Multi-systemic infectious disease syndrome, Mast Cell Activation syndrome, histamine intolerance, or any other chronic sickness, they are met with disapproval, resistance and rejection.

These sicknesses are hard. They are painful. They are worthy of compassion and understanding.

I read stories today, much like my own, of horrific head and neck pain, uncontrollable nausea and vomiting, unbearable itchiness, debilitating fatigue and weakness, tingling, numbness, shortness of breath, dizziness… stories that should bring people to tears. But essentially the message from doctors, family, and friends is all too often “suck it up”.

Here are a few one liners from people in my own life:

• “If you imagine yourself feeling better, you will”
• “You should try yoga/stretching – it can help relieve your ailments”
• “You don’t look sick”
• “If you get a proper bra fitting, you’ll feel much better”
• “I think you should see a psychologist”
• “You should try this supplement or that – it will change your life”

Would you say any of these to a cancer patient? Of course not. So why is it appropriate to say these things to someone who is deathly sick with anything else?

It’s not. It’s not appropriate. It’s not kind. It’s not compassionate. It’s not helpful.

If you have a chronic sickness that has left you feeling like no one understands, I want you to know you are not alone. There are a lot of us in fact.

Look for the stories of hope. They are out there. I’m not well yet – I may never be, but I refuse to give up hope simply because other people don’t understand.

I’ll say it again – YOU ARE NOT ALONE.

Music Of My Heart – these songs inspire me. I hope they inspire you too.