There are a variety of challenges and barriers that come with any kind of disability, and people who live with invisible disabilities often face additional challenges due to people not understanding their disability – or even worse, not believing them about their own disability.
Abled friends and family members often want to help, but don’t know how.
Every person with a disability is different, so it’s important to take the individual’s needs and wishes into account.
Still, there are some general things that you could do to support someone who has an invisible disability.
Learn About the Invisible Disability
Take the time to educate yourself about your loved one’s disability. Find out about the symptoms, the treatments, the side effects that may be caused by those treatments, and the types of limitations that people who live with that disability have.
You can also ask your loved one to tell you about their disability and their experiences.
Ask at a time when the person is feeling relatively well and energetic, not when they’re in a lot of pain or experiencing other distracting symptoms. Listen to what they have to say without interrupting or offering suggestions, and make it clear that they don’t have to talk about their disability right then and there if they don’t want to, but that you’re open to listening when they do want to talk.
Having more information about the disability can help you understand what your friend or relative is going through and experiencing. More knowledge can help you be more empathetic and anticipate their needs.
However, a little knowledge can be a dangerous thing. Don’t overwhelm the person you’re trying to help with suggestions for remedies or treatments.
Remember that they’ve been living with their disability for a while; chances are that you’re not going to be able to tell them anything they don’t already know or suggest something that they and their medical team haven’t thought of. Trust that they’re already doing what’s best for themselves and their condition and that what they need from you is support, not medical advice.
And remember that your loved one is the expert on their own body – if their lived experience with their disability doesn’t match up with what you’ve read in books or on medical websites, believe the person with the disability.
The medical information available to you may be incorrect or incomplete, but the person sitting in front of you knows what their own experience is like.
Don’t Always Wait to Be Asked for Help
Saying “let me know if you need help,” is great, but it’s worth recognizing when someone you care about might want or need help, but might not always be able to ask for it.
People with disabilities often worry about being a burden on their family or inconveniencing their friends. Asking for help can take courage and energy and someone who is dealing with a lot of pain or fatigue may not have the energy to reach out to you for help, but you can look for ways to reach out to them instead.
For example, if you know that preparing food is a struggle for the person with the disability, you could bring them dinner without being asked. Bring food that they like in containers that can be easily put in the fridge and warmed up later if they aren’t hungry at the moment.
Make sure that whatever containers and cutlery you bring are accessible for the person with the disability.
If you know that the person with the disability is particularly fatigued or in pain, don’t bring the food with the expectation of staying to eat it with them – though you can schedule it so that you have the free time to stay if you’re asked to stay. But be prepared to just bring the food and then leave, so that the person doesn’t feel the need to play host if they aren’t up to it.
Similarly, if you know that a person with a disability can’t drive themselves, reach out and offer to drive at specific times or to specific places. Just saying “let me know if you need a ride sometime,” may not be enough – try saying things like, “I’m going to the grocery store today, do you want to come too?” or “Can I drive you to your doctor’s appointment next Thursday?”
This lets the person with the disability know that you’re not just being polite – you’re looking for concrete ways to help.
Keep in mind that knowing when to help without being asked is a very individual thing.
Someone who normally prefers to cook for themselves may be open to having dinner brought to them when they’re especially tired, busy, or in pain, but not at other times. Pay attention to what’s going on in their lives so that you know when to offer.
Somebody who doesn’t know you well may not be comfortable with you accompanying them to a doctor’s appointment. Consider the type of relationship you have with the other person and how your offer may come across from their point of view. You may mean well, but no one wants to be another person’s project, and some types of help that might feel good coming from a close friend can feel inappropriate or uncomfortable from a new acquaintance.
Let Them Tell Their Own Story
It can be hard to watch a friend or relative struggle with some of the challenges that people with disabilities often face, such as inaccessible public spaces and unaccommodating workers or business owners. It can be tempting to make a fuss when you see someone you care about struggling and you think that the people around them should be more accommodating of their disability. But if you’re in that situation and your loved one doesn’t speak up about their own condition, it’s not your place to speak up for them.
Sadly, it’s not uncommon for people with disabilities to face discrimination, harassment, or abuse because of their condition.
People with invisible disabilities sometimes feel safer not speaking up, even if it means more challenges for them. And like anyone else, sometimes people with the invisible disability simply want to keep their medical information private and not discuss it with strangers. They know best when they feel comfortable and safe speaking up and when they feel more comfortable and safe keeping quiet, so it’s up to you to respect their decisions.
You can and should advocate on your loved one’s behalf if they ask you to, and if they haven’t asked you to when a situation arises, you can privately ask them if they want you to advocate on their behalf. But you should always follow their lead and keep what you know about their disability to yourself if that’s what they prefer.
Being supportive of a loved one who has an invisible disability largely comes down to listening to what they say, believing what they say, and trusting them to know what they need.