Being diagnosed and living with a chronic illness is life changing. That probably sounds a little dramatic, but a chronic illness is going to affect each and every part of your life for the rest of you life. You will forever be dealing with, and adjusting to the new and ever changing symptoms of said condition(s). Like awful pain, life altering fatigue, or debilitating nausea that lasts all day, just to name a few. You may also be adjusting to a treatment regimen, which may or may not work, and may have to be changed again in a few months. While also trying to cope with the enormous emotional impact of your new reality. While we learn to cope with all of the newness in our life all we really want from those closest to us, is a little support. Ironically, this support is not anything extravagant or over the top. It is not diamond rings or a meal at a five star restaurants.
Chances are high that if you have a friend or family member who lives with a chronic illness, or was recently diagnosed, that you don’t really know what you can do to help. This is not meant to be a dig towards you by any means. But most able-bodied people struggle because they don’t really know what to say or do. They feel this way because they can’t really relate to what we are feeling. They can’t relate to the chronic pain, or life altering fatigue. In fact, they often wonder if there is actually anything that they could say or do that would make any difference. They fear hurting their friend or family member so they pull away. This is not deliberate, but it is a reflex. So this is an effort to share some tips and ideas to help prevent that and help friends, family, and those with the chronic illness.
When you find out that someone close to you has been diagnosed with some long-term or chronic illness, or you meet someone who has been living with a condition for years, you may not know what to say or what to do! You may even find yourself wondering if there is anything that you could do or say that would actually help. I have good news for you, there are many things you can do!! You may not know what to say or do. You might even be wondering if there’s anything you can say or do that will really help. The answer is that there absolutely is: being a supportive presence in your friend’s life can actually influence how well they can manage their illness, both mentally and physically. According to Amy Watson, Ph. D, “Social support plays a critical role in coping with the condition. People who have strong social support networks tend to do better long-term.”
Licensed independent social worker Deborah Miller, Ph.D., who works at Cleveland Clinic’s Mellen Center for Multiple Sclerosis to help families adjust to an MS diagnosis, tells SELF. “There’s an increasing body of evidence that social support and other aspects of social wellbeing are almost as important in how a person manages their disease as other aspects of their medical care.”
But how can you provide support? Let’s take a look at 5 easy ways you can provide support to someone living with a chronic illness.
1. LISTEN – We don’t want (aren’t looking for) you to cure us. Or for you to understand all the medical jargon that we may have become fluent in, we really just want someone to listen to us when we speak. And someone who genuinely cares about us. Sometimes we need to vent and get things off our chest and would appreciate having someone to talk to who WON’T be judgmental. “Listening is so important to the chronic illness community. Sometimes all we want and need is someone to listen to what we are going through, without judgement or solutions, and to feel however we feel. It’s important that we feel heard no matter what we are going through. It’s tough being in pain every day. It’s tough dealing with the symptoms we have every day. Having someone to talk to who will give us their undivided attention and listen to us can make a world of difference in our day and our lives. If someone you care about is suffering and trusts you enough to talk to you about what they are going through and their feelings, please give them your undivided attention, listen, and be their outlet.” – Samantha Bowick
2. BE UNDERSTANDING– this one goes hand in hand with the listening. When we share things with you we need you to be understanding. Especially when we have to cancel appointments or days out of the house with you. If we had it our way we would never cancel those plans. But sometimes we just have to put our health first and cancel so we can focus on our health. We have a lot of people in our lives who don’t take the time to understand what is going on with us. And why we sometimes have to cancel. So if you want to support someone with a Chronic Illness please be understanding. Bridget says it best “Please understand when I say “no”, or “I can’t go” that it’s not personal. I try to save my energy for the days I know I will need it.” —Bridget Hennig
3. DO YOUR OWN RESEARCH – This one may sound a little odd but to show your support for your loved one you should take a few minutes and research the condition(s) they are dealing with. This will not only allow you to be more understand when he/she needs to vent about how they feel or what’s going on. But it will also help you to understand a little bit about what life is like for them. It makes me so happy when those I care about take a few minutes to research a condition I am living with. When they do that I know that they really care and they are in it to stay. Remember you don’t need to be an expert just knowing the basics of the condition will benefit both of you. “Spend some time looking up the condition and the treatment and symptoms etc. by doing this it will show your loved one you care because you took the time to find out all you could about the condition(s) they have. The most loving thing my spouse has ever done for me , has been all the time he spent trying to figure out all that ailed me and then ways in which he could help.” – Tammy Belaire Ford
4. ASK HOW YOU CAN HELP– Take a second to ask your loved one how you can best help them. Even if they don’t show signs that need help chances are they would love for you to at least offer. Even if they don’t accept the offer it shows that you are attentive and paying attention. In fact there is a high likelihood that your loved one will say they are fine and don’t need help. Cindy gives the best advice. She is head on she says “When I say I’m fine or I got it but look like death say I know you do but I’m going to help anyways.” — Cindy Karp
5. LOVE ME ANYWAY – This is probably the most important tip I can give you. It seems like one I shouldn’t have to give but it’s clear I do. An article published be the AARP “estimates of the divorce rate for couples in which one spouse has a serious chronic illness is as high as 75 percent.” It is clear that illness changes people. But honestly I AM STILL ME. I may not be able to do all the same things I once did. And I may have put on a little weight due to medications or lost some of my hair, but to my core it’s still me. I’m still the same person you fell in love with. So please LOVE ME ANYWAY! “Please love me anyway. Hugs are needed” – C.C Harley
Support is something we all want and need. We wish for support and understanding in all aspects of our lives. But especially when living with a chronic illness. We feel so misunderstood by everyone in the world that we crave understanding and support from those closest to us. We hope that our framily (Friends and family) will do their best to find a way to support us WITHOUT us having to ask for it. If we have to ask for support it almost defeats the whole purpose. It should be something that you do automatically. Not something that I have to ask for. We honestly just wish you would listen, and be understanding and above all we just want you to always love and support us and help us when we are down and in need of love and support.
Here are a few other tips that women from my chronic illness support group Lupie Groupies wanted to share.
Tip: “When I call and ask you what I was picking up from the store please don’t lecture me/accuse me of not paying attention. Memory Fog is a real thing!” —Bridget Hennig
Tip: “Laugh! Tell me jokes, talk to me about your day… my husband loves to read gossip magazine headlines to me like their breaking news. “OH MY GOSH BABE! DID YOU HEAR? BRANGELINA split up and JENNIFER ANISTON is getting back with BRAD and they’re having a baby!!” Neither of us care, he just does it to be funny.” Melanie Bettis
Tip: “Making us feel bad or guilty for the way we do things or for choosing not to do makes us feel really bad. So please try not to be negative and say negative things towards us. It doesn’t help!” — Brooke Hennig
Tip: “Don’t not talk to me or ask to hang out because I have Lupus and you don’t know what to say. I am still me, with just a few less spoons…” — Ruth Ford
Tip- “Bring food. Lol. Seriously, I often don’t have the energy to make or pick up food. My parents often bring me lunch and it’s a major help.” — Joyce Brock
Tip “Be understanding when I don’t feel up to doing something right now, because I am out of spoons. Be patient with me. I will feel like it later.” — Megan Chandler
Support isn’t hard. Love, a little understanding, and just being you are basically all that is needed. We still need as much normalacy as we can have while adjusting to our new normal. Help us in that journey. Come along side of us yet support us.