Dear Friend/Acquaintance/Family Member/Colleague/Stranger in line at the mall, etc.,
I hope your day thus far has been well and that both your heart and mind are open as you continue on reading this letter.
I am used to getting looked at when my husband pulls into a handicapped spot, or when I am out with my cane or walker. It is hard for people to grasp a young woman in need of mobility aids; a second glance is a relatively natural response. The questions and comments I hear vary from day to day, but the most common one is “what did you do?” somehow implying that my disability is my own error because the only reasoning they can come up with is that I fell while drunk and in heels. It’s not a ridiculous assumption as I’ve had my own fair share of liquor-induced accidents, but the shape I’m in currently is in no way my fault.
For the most part I welcome questions and inquiries. It is better that you know the truth so that the look of shock or ignorance is spared for the next person like me you come across. I am definitely not alone here and there are millions of chronic illness warriors around the world who need any bit of advocacy and awareness I can spread, and I am more than happy to do so!
Here are answers to some of your pressing concerns:
1. These illnesses are chronic which means they will last an incredibly long time, most likely the rest of our lives.
2. We have probably tried every single “miracle cure” you’re trying to sell us. Thank you for your efforts (and we may bring them up to our doctors) but we don’t need to get your hopes up, or our own. I’m glad it worked for you sisters’ husbands’ friend but that doesn’t mean it will work for me.
3. I know I am too young to have these illnesses. But nevertheless, I have them and this is the situation. Neither of us needs to lament over this fact any longer, thank you.
4. Diet and exercise are important, no doubt about it, but if I didn’t need to take handfuls of life saving medication I wouldn’t. These are prescribed for a reason.
5. What we do need, more than your stares or medical advice, is a smile and for you to maybe hold the door open for us. Simple kindness goes a very long way!
6. If you see me stirring around uncomfortably in a waiting room/office/movie theatre it is most likely that I’ve been in a position too long and need to move. I’m trying to be inconspicuous and I apologize if I’m in your way but the pain is usually out of control and a little re-positioning goes a long way.
7. If you see me at home (yours or mine), you may see me taking all sorts of pain medication. No, I’m not addicted, these are necessary to get me through the day. Please withhold your judgement. I’m not happy about the situation either.
8. Yes, the mobility aids are necessary. They literally aid me to be mobile. If you’d like me to move Sally the Cane or Felicia the Walker are coming with me.
9. It can be incredibly difficult to watch someone writhe in pain and it brings tears to my eyes that you have to see me like this, but it is my life. I want to spend time with you and be the old me, I want it more than anything, but the new me needs you also. When I’m in this sort of pain please just let me be and maybe offer to grab my meds/tens machine/heating pad. I know you’ll want to help more but your presence and understanding are all I require.
10. Remember I’m still me. I am still up for movies/netflix/and gossiping all night long. I can rock a movie marathon with Sour Patch Kids like nobody’s business.
Thank you so much for all you do for us. I know chronic pain and illnesses are hard to understand- I still struggle with grasping all of these straws- but your willingness to stick it out with us means the world.
Please spread this to all your friends! Understanding is key!