It’s #InvisibleIllnessAwarenessWeek. I could try to share with you what it’s like to live with an illness or disability that is not immediately apparent, but others have done this really well already, and let’s be real – I’m not that succinct. Instead, I’m choosing to focus on helping people who have not experienced invisible illness or disability to understand and become allies for people with invisible conditions (we need you, healthy people!). Whether or not you realize it, someone you know is most likely living with one of these conditions. You can help by committing to becoming an ally for them. Here’s how:
1. Keep an Open Mind
Only the person who is close to you and living with an invisible illness can tell you what it is like for them. What they describe may not match what you have heard in the past about their specific condition. Illnesses manifest themselves in a variety of ways, many of which don’t match the textbook description. Try to keep an open mind and believe what your friend confides in you about how their illness or condition affects them. Imagine what it would be like to be in their situation, and what you would want if it was you!
2. Ask, Don’t Assume!
We often take great lengths to disguise how we are feeling from the general public. However, this sometimes leads those closest to us to believe that we are fine because we look fine. Instead of assuming we are as well as we look, ask how we are feeling today (for real). This is also important to remember when it comes to giving advice. We respect that you are trying to help by telling us about that new treatment you heard of, but ask before you offer up the info! Remember that we have a team of doctors working to help us, and are constantly working to improve our condition. There’s a good chance we’ve already tried the thing you heard about, or learned it’s not an option for us for one reason or another. Try to understand that we probably feel bad about the fact that it didn’t work out. We sometimes feel as if we have failed because we are still struggling.
3. Be Willing to Learn
I am always flattered when a friend or family member takes the time to ask me about my condition, or to research the condition on their own. Broad research may not help them to understand my day to day life, but it does give them a frame of reference when I share my experiences with them. Learning about the condition of the person that you care about is a great step to becoming an ally that understands and is able to accommodate and advocate for your loved one.
4. Be Open to Making Accommodations
Instead of trying to fit your friend into your preexisting plans, ask them what they need to make getting together work. For example, parties are really hard for me (and many others with invisible illness) because they are very demanding physically and mentally, and often occur in loud and bright environments. For me, things that help are meeting in a quiet place, making plans in the afternoon (generally my best time of day), and making plans one on one or in smaller groups of people.
5. Be Flexible
For many of us, the way we feel and what we are able to do changes from day to day (and sometimes hour to hour). Sometimes, being willing to keep plans up in the air can be an absolute lifesaver. We want to spend time with you, and if you are willing to be flexible about how, when, and where we do so you, we will love you forever. By being flexible you can take a heavy burden off of our shoulders, and reduce the sacrifice that we make to spend time with you.
6. Don’t Take it Personally
Still, inevitably there will be times when no matter how flexible you were, or how many accommodations you were willing to make, we just can’t do whatever it is that we had planned. Try to understand that we aren’t unreliable, our bodies are. We really want to spend time with you, and although I know it’s disappointing when someone cancels plans, try not to take it personally. Do your best to be understanding and get excited about next time. If you really miss your friend, you could offer to come over and relax together. Sometimes showing up says more than you know.
7. Believe (in) Your Friend
This one is pretty simple, but very important. Make the choice to believe what your friend tells you about their life. Understand that while some people will always suspect that they are faking or exaggerating their condition, in actuality they just spend a lot of time faking well. Believe that with the right accommodations, they still have great potential.
8. Be an Advocate
If you are out in public with your friend or family member, you may start to notice that there are people who don’t understand that illness and disability cannot always be seen, and can occur in people of any age. Healthy people often equate disability with old age and/or the use of a mobility aide (cane, walker, wheelchair, etc…). Commit to helping the people around you to understand that disability comes in many forms, and does not discriminate in regards to age or physical appearance. See #2 and ask your friend whether they are comfortable with you speaking out when others are less than kind in their company.
There are undoubtedly more ways than these to be an ally to someone living with an invisible illness or disability, but this is an excellent start. This #InvisibleIllnessAwarenessWeek, commit to be an ally for someone that you love! You could be the person that makes their world brighter.