6 Ways To Support Chronic Illness

We’ve all been there. A loved one suffers from a terrible experience and we’re not quite sure what to say or do. How can I make this better without actually making it worse? Several months ago, I went to visit a friend who had just been diagnosed with multiple sclerosis. She’s one of the most active people I know. She’s always on the move, either hiking, biking, or running. I felt devastated when I  heard the news, and I just wanted to help. I brought her favorite meal, sat down to talk, and realized that I had no idea what to say. I have experience with my own illnesses, and I talk to her all the time, yet I sat there with no words because I wasn’t sure if my words would be perfect. I love helping others; I love conversations with the people I care about. Speechless is not a word most people would use to describe me, but there I sat, silent.

During my many years as an autoimmune patient, I’ve joined different support groups to be able to connect with others who could relate to my journey, my ups and downs, and my medical needs. One problem I have heard consistently is that autoimmune patients don’t always feel supported by friends and family. Because I’m sure there are people in your life who need this support, whether their condition exhausts them every day, causes chronic pain, or the makes them unable to walk or breathe properly, there are ways to help. I surveyed several chronic illness support groups to find how their members feel most and least supported by those they care about, and here you’ll find the most common answers. To protect the privacy of contributors, I have used first names only.

1 Support is learning about the illness. Melissa, a victim of sarcoidosis, reports that her husband did tons of research to learn more about this rare disease and helped her to make medical decisions based on what he had learned. Many newly diagnosed patients are overwhelmed with the amount of information coming their way and the brain fog that often accompanies an illness doesn’t make it any easier to make decisions. Her husband’s support came at a crucial time, and she couldn’t be more grateful. For those with chronic illness, knowing that someone cares enough to gain an understanding of what they’re experiencing helps to create a strong support system and a more positive experience.

Something as small as understanding a special diet is another huge gesture. I have friends who know I have celiac disease and have researched the gluten-free diet. Although they don’t follow it themselves, every time they invite my husband and me over for dinner, they serve a full course gluten-free feast, always more delicious than anything I’ve ever cooked myself. I certainly would never expect this treatment, yet I can’t help but feel the love knowing they put in so much effort to support me and make me comfortable. Realizing basic details about what people live with each day will allow deeper conversations and build a more solid, trusting relationship.

2 Support is knowing the symptoms and helping the sufferer through them. This truly is an extension of the first guideline. Just take the information you learned and dig a little deeper. Take time to quietly observe your friend or loved one, and you’ll start to see aspects of the disease that he or she contends with each day. Many diabetics fear having a hypoglycemic reaction while sleeping. Christina has repeatedly voiced this concern to her husband and has asked him to wake her up to see if she’s okay before he goes to work. After 5 years of marriage, he still refuses. Beyond frustrated, Christina feels that her husband hasn’t taken enough time to learn how dangerous low blood sugars can be, nor has he accepted her feelings.

In contrast, Raven is a diabetic who appreciates that all of her family members know what to do when her blood sugar is too low, and have taken care of her multiple times when she was too weak to help herself. Being able to trust family with her life is crucial to her physical and mental well-being.

Some chronically ill patients feel uncomfortable asking for help, but if you can recognize when when their thoughts and actions don’t seem quite right and know what to do about it, the support you can then offer is invaluable. If at any time you’re not sure what to do, my survey shows that most will appreciate you asking how you can help. Do you need to ask every day? Absolutely not, but if you know the patient well enough, you’ll start to recognize when there are needs.

Leese suffers from several chronic illnesses, and is currently in a wheelchair. She struggles to do basic tasks to take care of herself and appreciates when people bring her meals and help her to clean. She explained, “When someone will clean your toilet for you, man that’s big!” Leese feels blessed to have a good support system that includes people who have asked, who know where her illnesses create difficulties, and who help to eliminate those struggles.

3 Support is not just listening to but really hearing your friend or loved one without condemning or dismissing feelings. Autoimmune diseases are often referred to as invisible illnesses. Victims can be suffering yet still appear healthy. The worst thing you could do is judge them. Liam suffers from lupus and has times when he doesn’t feel up to going out with friends or attending family gatherings. He feels betrayed by two brothers who constantly tell him that there is nothing wrong with him and that he looks perfectly healthy. They also accuse him of using his disease as an excuse to avoid family. Remember at all times, the patient’s appearance does not always match his health. Don’t ever make people feel bad about their needs; instead, continue to extend invitations and enjoy the time they can be with you. Perhaps consider stopping by to visit your family members or friends who aren’t up to going out. They may have enough energy and feel well enough to spend time with you at their own home.

Amber Mason, a clinical mental health therapist, recommends “Holding Space,” a technique that would likely work for Liam’s brothers and others to build stronger relationships. Many chronically ill patients worry about loved ones not understanding how they feel. While it may be impossible to actually experience their physical symptoms or their emotions, showing an understanding and acceptance can truly lift a person.

Mason states, “Holding Space can be thought of as reserving judgment and allowing the people to feel whatever they need to in a given time frame. Within this framework, one technique that can be helpful is providing validation, which includes such statements as, “It must be difficult to feel, “XYZ.” Another effective strategy is affirming.” Mason continues with an example, “It’s okay to be frustrated that you need to sleep more than usual. I don’t see you as weak or lazy. I’m proud of you for being willing to listen to your body.”

Patients with chronic illness often feel bad when they can’t do what they used to or when they can’t keep up with others. Do your best to understand them, to accept their feelings, and to encourage them to take care of themselves.

4 Supporting IS NOT telling the worst horror story you know about another person with the same disease. William shared a story that most people with chronic illness can relate to. When he was first diagnosed with polymyositis, he explained his diagnosis to his neighbor.

“Oh, I know about that disease,” Evan, his neighbor, said. “My uncle had it. He got to a point where he could barely lift himself out of a chair, and then he died from respiratory failure.”

William reported that for the next year, he worried about worst case scenario situations instead of finding the positives. Perhaps people feel the need to make a connection or to encourage someone to take care of themselves through a story, but the tales that end in death, amputation, and collapsed lungs aren’t beneficial.

5 Support IS NOT telling people how to live their daily lives. It’s not that the chronically ill individual doesn’t want to hear your thoughts, but rather be careful what advice you give and how you give it. For example, shouting across a crowded gathering, “Stop! You shouldn’t be eating that,” probably isn’t going to be beneficial in any way.

Along the same lines, explaining to the waitstaff all your friend’s medical conditions and her need to make a healthy dinner choice–well, that’s personal information that she may not want to share with people she doesn’t know. Other common advice trends including divulging “secret remedies” to cure a condition or telling people that if they just exercised, all their problems would go away won’t help either.

We all know that words and deeds can make people feel worse rather than better. Think carefully and know the difference between well-researched information and an opinion. Also, consider the timing of the topics you approach. If you truly are worried about a friend on a special medical diet who seems to be eating the wrong foods, ask about it quietly. Chances are this person understands his or her own condition and can offer an explanation that will help you to understand the illness at a deeper level.

6 Support is treating the chronically ill the same way you treat your healthy loved ones and the same way you treated them before diagnosis. Your friend is not diabetes, your brother is not multiple sclerosis, your aunt is not rheumatoid arthritis, and your spouse is not Guillaine-Barre syndrome. Your loved ones are much more than their illnesses and will appreciate that the relationship continues as it always has, but with some added accommodations or help when needed. Don’t stop inviting people to events because you’re not sure if they can physically handle a situation. Trust that they’ll let you know if they can’t and be okay with it. If they do accept an invitation and seem to be struggling along the way, slow down along with them. Additionally, don’t stop asking them for advice because you believe they have enough issues to burden them. The person who is always right there to pull you through a tough situation is still that person and needs to feel loved and trusted as always. Your chronically ill friend or loved one still needs to feel like a whole person.

You got this! I know you do… the list is doable. If the methods of support seem overwhelming in any way, choose just one and start with that. Keep these in mind as you connect with your chronically ill loved ones or friends, and you will build trust and a stronger relationship that will last a lifetime. Finally, remember your friend has many of the same needs and emotions as the healthy people in your life. Everyone lives with both misfortunes and blessings, and chronic illness does not eliminate the desire to share both with those closest to us.