I have been wondering whether to write this piece as it can be hard to read for some and harder for many others to understand, but whenever I return to the question of intention I am convinced I am doing the right thing for the right reasons.

And here it is…

By now, after all these years, many of my friends and loved ones have all learned about my health challenges. It was just a mere concept to many people and a great many chose to simply ignore it. I really didn’t mind which way people chose to go as it was far more important for me to be able to accept what was happening and less important why they left.

Time went on…

For these and other reasons I rarely explained in detail the challenges I was facing and so my health simply drew a veil between me and the world that everyone else lives in. I could see out but no one can see in.

Many autoimmunes are forced into this kind of life and existence, tossed around by a sea of forces that no one ever really sees or recognizes. It’s mostly overlooked but nevertheless that’s how I live now. That’s how I exist now.

Occasionally someone will come along and dare to see the reality and look below the surface but they are rare and I have to be mindful of what the real intention is. Is it to appreciate or simply judge? At this point few people know the truth of day to day life and it is often usually only other autoimmunes that will see and understand the most.

Until.

One day an old friend contacted me out of the blue, feeling overwhelmed and confused that a close relative of his had suddenly been rushed to hospital facing a diagnosis of a very difficult autoimmune disease. My heart sank for him. My mind went back to my own decent into hell and panic. It’s not easy and there are so many more questions than there are answers. It can feel like the sky has fallen upon you as you slowly start to try and put some of the pieces back together.

As the months have drawn on and the realities are slowly lighting up like neon signs for this dear friend I can only do my best (based on my experiences) to console and support him. He aches and empathizes for the loved one going through it and although he doesn’t know it yet, he will be changed forever.

What he is witnessing is painful, soul crushing, maddening, frustrating, frightening, confusing and the ultimate cruelty, but the only consolation is that it is not happening to him. He is not personally facing the life sentence his loved one is. But it’s bad enough to have to bear witness to.

On that moment I realized that at last someone I know can have some idea what it’s like behind the veil. Although I dearly wish they didn’t have to. Things are not easy behind here and once you truly look inside you are changed forever.

For many who have been through, or continue to go through, some of the hardest things in the world to endure (pain, loss, trauma, torture) there are few people who will ever be able to comprehend what we go through. They may have smaller pieces that they try to compare them to, but it’s not even close to the full picture that many of us see.

Often times autoimmunes go silent because we no longer share a reality or speak a language most of the world can recognize. Because the world doesn’t understand we are often looked down on, pushed away and mocked.

I recall the reaction of one family member who claimed they were embarrassed by my illnesses and life. As I heard this I felt a strong emotion of shame, but not on myself. I felt shame for the lack of empathy and kindness for the family member in question. Who they were and how they acted revealed such deeply rooted issues that I never truly saw before.

After the initial disappointment though I felt nothing.

It is a sad truth that people never really appreciate something until it happens to them. As I became increasingly aware of this I realized the only thing to do was to quietly retire from interactions and further disappointments. So I did.

Now as I talk to my old friend I do my best to reassure him, comfort him and remind him that this will be a marathon and not a sprint. He will have his own set of unique challenges and pain from his own position, and this will need to be supported too.

My husband too has his own pain and challenges that he carries and no one sees. No one calls him offering support or an ear. He is on his own in many ways.

No one gets out unscathed.

There is never a time in which real love is so keenly revealed as it is when there is a health crisis. Those that love deeply will stay, no matter what; despite every impulse to leave. Despite their limitations and heavy pain they stay… that’s what love does.

I don’t blame or harbor any ill will towards those that have gone. Their choices do not make my days any less busy or challenged. I have to keep going with or without them. Thus we must choose carefully those we take along with us on this journey. They have to make for an effective team or they are simply dead weight.

My friend will, in time, see many things come to pass. The fear. The depression. The loss. People coming and going. The drug trials. The frustration. It will run the gamut of emotions and experiences for him and his relative.

All I can do is be there when he needs me. And I will, because that’s what the autoimmune community can do for our own, and we should do be able to do it well!

Gentle hugs

Trish