This is a terrible feeling for both of you, so I want to share tips from my vast experiences of having others say and do helpful and unhelpful things in order to empower you to be able to be fully present with your loved one. It is better to be there to show your love and support, even if you are silent, than to not show up at all because you’re scared.
There are two important concepts I will discuss before I tell you how to help others most effectively: ableism and the Spoon Theory.
The Oxford English Dictionary defines ableism as “discrimination in favor of able-bodied people; prejudice against or disregard of the needs of disabled people.” Be careful of what you say in general regarding people who live with chronic illness. If you tend to think that others exaggerate their symptoms in order to get something they want, like a handicapped parking permit or a wheelchair at an amusement park, you are thinking in an ableist manner. This attitude can make others, including your loved one, uncomfortable to speak with you about their symptoms because it appears you may not give them the listening ear they deserve. Even though you can’t see others’ pain or experience it yourself, their pains are valid, important, and deserving of care. If this is true, I know you don’t mean to be giving off this impression! It’s so easy to misunderstand or accidentally offend someone. It can be hard to empathize without having been there yourself, but you still must have empathy for others in order to be able to help.
The next concept is especially important for those who struggle to relate with people who live with chronic illness. The Spoon Theory is a beautiful metaphor written by Christine Miserandino to explain life with chronic illness to people who have the blessing of not knowing what it’s like. I encourage you to go read it in its full glory. It’s only two pages long and I can guarantee that it will impact the way you see and empathize with others.
Now you will understand why some people who live with chronic illness call themselves “spoonies!” I believe that reading the Spoon Theory got me to come to terms with my changing mind, body, and life. Even people with chronic illness sometimes struggle to understand chronic illness, too! But with the support of people like you who have our backs, we can come to terms with it.
Here are some basic tips for what to/not say to and do for someone in order to show them you care.
- Be with them in their moments of pain, even if you have nothing to say but silence.
Really be there. Don’t be frightened away by the fear of not knowing what to say or do. Ask if it’s okay to hug them or hold them, or if there is another a non-painful way for you to show your affection, before you do. When listening to them, don’t try to hurry them along the path to feeling better by saying you have a 5-step plan or you know someone with this disorder who was cured or anything like that. Understand that they are feeling scared, weak, and in need of love. Validate their feelings by telling them you believe everything they are saying. Tell them how difficult the situation they are in is and that they have the right to feel the ways they do. Simply put, this sucks and it shouldn’t be happening to them, but life can be really unfair. Express your concern, love, and support.Your loved one can do Google searches when they’re encouraged and ready to find out those 5-step plans (although in reality, we spoonies know that there’s a lot more than just 5 steps). What they can’t find on the internet is the love, openness, and empathy they hope to get from you.
- Assure them that their being sick is not their fault, nor does it make them a lesser person.
No matter your religious beliefs, no matter your morals, no matter your history, no one deserves to be chronically ill. Do not let your loved one blame themselves in any way for what is happening to them. When I began experiencing chronic pain, I felt like it might have been my fault. I couldn’t help it. However, we live in an unjust world. Bad things happen to good people every single day. You, as a trusted member of their support system, can be one of the first people to assure them that this is in no way their fault.
- Ask them how you can best support them in their times of need.
Would they like you to ask how they’re feeling? Would they like to you talk about and together do other things and distract them from their own situation? Would they like you to keep tabs on their medical visits and hold them accountable for the lifestyle changes they’re making? Would they like you to call them, come visit them, or give them space? Would they like you to help them push their perceived limits? Ask them because your loved one may feel like a burden to you if they ask themselves. Assure them that they are not a burden and that you would love to be there for them in whatever ways you can.
- Ask them what specifically you can do for or with them.
Simple things, like offering to help with chores, can make a huge difference in someone’s day or week. Remember that it may not require much energy of you, but for your loved one, it would require multiple “spoons.” Ask if there have been activities that have been challenging them and see if you can help with them. Nothing meant more to me the week that I was having the worst back pain I ever had than my friend offering to get my laundry done for me. It was simple, lovely, and humbling, not to mention exactly what I needed.
- Get educated on their condition.
It’s absolutely okay to not know anything yet about their condition, but it’s not to pretend that you know something about it when you don’t. Nothing’s more awkward than having to re-explain a condition to people or having someone think they know what it is and say something that’s completely false. You can really hurt someone if you don’t know what the truth is, especially for psychosomatic illnesses that fluctuate with stress levels. Always know that there are both physical and mental attributes to illness; no one is sick because they want to be. I have had people pretty much tell me that if I spent more time relaxing, then I wouldn’t be sick. My desired response: “Thanks for the advice, champ; thanks for telling me that it’s my fault I’m sick! I’m a psych major and I know I don’t know everything yet, but I do know how to cope with stress better than the average person.” What people should have said is, “It’s not your fault you’re sick. I know you’re doing everything you can to keep yourself well, and sometimes it’s still not enough. I’m so sorry that you’re in so much pain, but I just want to remind you that it’s not your fault.”
The most important thing to do for a loved one who lives with chronic illness is to show them that you see them as a person, not a patient; that you are not going anywhere, even when the going gets rough; and that you love and care about them.