Relationships can be especially challenging when at least one of the people involved have a chronic illness. In previous writings, I’ve explained the pain we go through and how hard simple, everyday activities can be for those of us with chronic illnesses. In the comments on those pieces, the overwhelming theme was people having trouble with their loved ones- or even just people they have to interact with daily- not understanding their challenges and limitations, and thinking they’re just lazy. This is a bit of a tough subject to address because you’d think it’d just be as easy as explaining it to them and all is well. It’s not at all that simple, so I’ve decided to do my best at first explaining why it isn’t so easy, and then some things that can be done on both ends to help.
I’ve dealt with these issues myself for over a decade, and have closely observed my own, and others’, relationships. If you care for, or interact with someone with a chronic illness, please read on to the end. It takes both sides acknowledging some things in order to make any situation better.
First, let’s acknowledge that invisible illnesses DO exist. We know this because modern medicine has discovered ways of finding evidence of them. In fact, treating things like heart disease, high blood pressure, and high cholesterol is now routine in modern medicine. They affect so much of the population that they’ve become commonplace, allowing many to forget that there are some invisible illnesses that aren’t so easily treated and well-managed.
The big killers like, diabetes and cancer , now garner enough attention that the majority of society understands them, and even advocate for more research and treatments.
There are still many invisible illnesses that don’t get much attention and are very misunderstood, causing it to be a daily struggle for those of us that live with them to get people to recognize and acknowledge these illnesses, and their impact on our lives, bodies, and minds. Society expects us to function at a level we just aren’t capable of, and when we don’t, they judge us, whether the mean to, or not.
Why is it so hard for those that don’t experience these chronic conditions to understand our struggle? Because they can be confident that their body will function as they expect it to- as long as they do the basics like eat right, stay hydrated, and get enough sleep. They haven’t experienced waking up everyday feeling worse than when you laid down. Their bodies don’t malfunction and prevent them from being physically able to do normal activities. For them to try to imagine their bodies simply not responding to their will, would be almost as difficult as someone who has never been able to see- trying to imagine color. You can’t feel color, so I imagine trying to understand what it is when everything is dark to you is very challenging.
The average person has no idea what it’s like to collapse two hours into a normal day, for no apparent reason, and have to be rushed to the ER. The nature of fibromyalgia, and other invisible illnesses, makes it pretty hard to understand why we may be able to handle running some errands today, but tomorrow we really may need to stay in bed all day to recover. This can be frustrating for them, which frustrates us greatly because we’d LOVE to be able to do “normal” things.
Now, this next part is directed towards those WITH the chronic conditions that make life a struggle. Since this is a kinda long piece, I figured I’d let you know that if you are someone who cares for, or interacts with, someone who is chronically ill, you can skip ahead to the part the directly addresses you if you must, but reading through this part may just give you a better understanding of your loved one. There is a link below if you want to go directly there.
For many people, not being able to imagine or understand what it’s like is why they don’t seem supportive of us. If they truly understood, they would be treating us completely differently. There ARE some who really don’t even want to try to understand because they aren’t concerned with our pain, or any other symptoms. Those are the kind who are just not good to have around. If you aren’t sure which kind you’re dealing with, it may be time to have a conversation to find out. If they’re willing to learn about your condition and attempt to understand, there are plenty of resources- including this piece. If they aren’t willing to have a conversation, or read some information you give them, or somehow put forth some effort to “get it,” then it really is time to evaluate why they are in your life. If you find that your loved one is willing to put forth some effort- then communication is necessary to make things better. Read on for some things BOTH parties need to keep in mind.
To my peers who have to struggle with pain and other symptoms daily:
Sometimes, we can make our relationships even more complicated by pretending to be “okay” or pushing ourselves to do more than our bodies can handle without serious consequences. Most of us really hate being a burden and feeling helpless, so we try to do whatever we possibly can to act like we’re okay all the time even when our bodies are screaming at us to stop. Then, we push too hard, and our bodies shut down COMPLETELY and we’re seen as lazy or anti-social. Or, those around us get so used to us acting normal that when we can’t- they’re baffled.
Trust me when I say I would give just about anything to be able to depend on my body letting me wake up, shower, get dressed, go to work, cook dinner, and clean house everyday. If I could, I wouldn’t be seriously struggling financially, and constantly feeling guilty for putting so much on my family.
I wouldn’t have to feel like I haven’t done enough for my children. I’d be able to take a vacation and purchase something considered a want instead of only the absolute needs. I 100% understand the urge to push yourself to keep working, and be there in all ways for your family and friends, but if you aren’t around at all because you pushed yourself right into something you couldn’t recover from– how is that good for them?? It’s really not. At all.
Yes, you should definitely do whatever your body is reasonably capable of, but if you’re like me, you tend to want to ignore the doctor’s recommendations and do much more. Be fair with yourself when determining how much you should do. Don’t go to the extreme of too much, but don’t use your illnesses as an excuse to not do enough either. In addition to keeping our pride in check, we also have a responsibility to not have unreasonable expectations for, or take advantage of, our loved ones, or society. I’ve seen this happen far too often, and it makes life even more difficult for those of us who only use the assistance, resources, and special considerations we truly need. Yes, we do have a rough life battling our illnesses and there are circumstances where we really do need more consideration than others, but it isn’t OWED to us by them. They didn’t cause our conditions.
Is it awful and unethical when they see our limitations and obstacles but refuse to give us any consideration? Absolutely- but we shouldn’t have the attitude that it’s fine to take advantage of every person in our lives just because we’re sick and they aren’t. They didn’t have any more control over that than we did really. They were just born lucky enough to not have to experience it. So, be reasonable about it. If you are feeling decent that day and can handle making dinner, or whatever, do so instead of expecting someone else to do it. If you can handle walking a few extra spaces that day, don’t use up the handicap spots. Leave them for someone who IS hurting badly at that moment.
This also applies to your interactions with people. If someone in your support system is having a bad day, recognize and acknowledge that. Offer support like you’d want them to do for you. Even harder for us to do sometimes, is recognize when WE are having a bad day and being particularly difficult. The pain and symptoms of our illnesses can make us irritable and less likely to communicate clearly. See when it’s happening, and attempt to manage it. At the very least, learn to acknowledge it after the fact, and apologize when your symptoms are a bit more tolerable. Show those who do try to be supportive that you appreciate them on a regular basis. If this is hard for you to remember, maybe set a reminder on your phone, or mark it down on a calendar to show your appreciation every so often. It can go a long way towards keeping our relationships healthy. Our conditions can make remembering things difficult, so use whatever tools you need.
Every single one of us can have bad days, sick or not, so what we do in between can really matter. Keeping our relationships healthy can also help with our mental health. Being chronically ill can be depressing. It comes with many emotions that are a challenge to manage. Some learn healthy coping mechanisms, others…not so healthy, and some even depend entirely on others to constantly build them up. That’s just too much pressure on the people around you. We have to work on our mental health constantly just like we do our physical health. If you’re feeling worthless, or like a burden, find something you’re able to do that makes you feel productive but doesn’t worsen your symptoms.
There are several hobbies out there, like knitting or jewelry making, that can keep you distracted and make a bit of income for you. At the very least, you can stay distracted and make gifts for people. Many crafts can be done as you’re able, and put down when you’re not, without causing a problem, so you can work on them when you feel good enough. I have an article about using distractions as coping mechanisms that you can find here:
If crafting type things aren’t for you, there’s always writing, music, and other options. There are also things that “feel” more like work that you can do from home. Most communities have some sort of issue that needs resolved or improvements to be made that need attention from local authorities. Find one that matters to you and advocate for it. Call, or write emails or letters, to the officials that can affect change. Create a group of people that are interested in helping and keep them organized. You can do all of this from home, in your pajamas if you want. Modern technology gives us an outlet those before us never had.
I write to help me cope with my own feelings of uselessness and my chronic conditions. Getting it out of my head helps me process everything, and if it can help even one person to not feel like they are alone, it helps make my struggles worth it. There are even plenty of real jobs that are offering the option to work from home. If you have the ability to adhere to a schedule and the equipment required, this might be for you. The Mighty has been publishing a monthly article listing available work from home jobs they’ve found, so check them out if you think this is something you can handle.
Do SOMETHING to help keep your emotions in check without depending on others to be on top of things all the time. It’s unreasonable to expect even the most caring of people to do so. Odds are, we’re already on their minds most of the time, just not in a “do they feel isolated or alone?” kind of way. It’s more like “gotta provide for my family and make sure they’re ok.” This is generally because they feel like they’ve already addressed the issues of loneliness and feeling isolated by being there, so they shouldn’t be an issue anymore. It isn’t wrong of them to think this way, it’s just different from what we’re focused on. This leads us into how those who care about us can possibly adjust some things to help make things a little less difficult.
IF YOU SKIPPED AHEAD, HERE IS WHERE YOU START READING
If you are someone who cares about, or interacts with, someone who is chronically ill, it can be pretty frustrating to know what to do to help them, so I’m offering you some suggestions that may help. Some of you may be thinking something like “I already work and help with the kids and cleaning, what more do they expect?” Please know that I really do understand that regular life can be stressful and hard to manage, even under the best of circumstances. The work you do taking care of the kids, finances, and housework is amazingly helpful. I don’t at all mean to suggest that you aren’t already doing plenty, but when someone you care about is chronically ill, there are more things to consider. We spend a good part of our lives agonizing over why our bodies have to be difficult. We have to deal with these thoughts on top of the pain, and other symptoms our conditions create, everyday. No breaks.
Think about how you feel when you haven’t eaten all day, or maybe didn’t get much sleep. It makes you irritable and not yourself. Now imagine having to wake up that way every single day. It’s exhausting even with the best support system, and can be emotionally crushing. Extended periods of severe depression or stress can take a toll on the immune system, making managing any conditions even harder on your loved one. This weakens the will to fight, so doing everything you can to be understanding and compassionate is important.
You can accomplish this first by doing some research. The internet has many good resources. Just be sure what you’re reading has a credible source and is based on factual information. Learn about their symptoms, possible complications, and side effects of their medications. Do your best to imagine what life would be like if you had to deal with all of it. Evaluate the expectations you have for the chronically ill person in your life. Do you expect more than they may be capable of? If so, adjust your expectations because they don’t have a choice in the matter. Keep in mind that they already feel like a burden and take care not to add to that. Help them find ways to feel useful (without making them feel like they aren’t doing enough.) If this requires changing up how you do things, then so be it. Ask them how you can help. Everyone has unique needs. Don’t get mad or offended if they aren’t able to get out and go somewhere, and don’t stop asking if they want to, or can, go out. They may actually be able to handle it from time to time.
Be willing to adjust your outings to accommodate their pain or symptoms. There are many ways to do so if you just try to think outside the norm. Let them know that you really do want to be there for them- and mean it. Don’t act put out when they ask for your help please, because they probably didn’t want to ask in the first place. I agonize over asking for help, and will go to great lengths to avoid it. If you can see a clear need, don’t make them ask – offer help. (See my story: “Ways To Offer Help To Someone With Chronic Illness…and Ways NOT To” for ideas on how) Unless they have expressed that they’d rather you not help or offer to, of course. There are some people who truly don’t want help and get offended, so respect that if that’s the case, but also understand that many will try to refuse help only because they already feel like you do too much, and don’t want to be a bother. In those cases, try to reassure them that they aren’t a bother and you don’t see them as weak or helpless, but you do realize their bodies have limitations. If they still refuse your help, let it be, but maybe offer from time to time.
For the ones who will let you help, try to recognize when they’re having a particularly bad day and be understanding. They may be irritable and unpleasant at that moment, but you can’t know how extremely intense the pain can be. It’s like a jackhammer in your brain that envelops your entire being and makes you unable to focus enough to even form a simple thought. So there are times when their behavior is purely survival instinct. They can’t worry about their tone of voice, word choice, or facial expression because those things don’t even exist in that moment. Think about when you stub your toe on something really badly. That overwhelming intense pain that makes you yell, curse, or lash out. Yeah, it’s kinda similar to that feeling except it goes on for much longer before it even begins to subside.
The worst part? We have absolutely no control over it. It’s happening TO us, not because of us. Each person is unique and has certain things they need from their support system that will help them specifically. It’s going to be different for everyone, so ask them what they need in addition to putting all the things I’ve suggested into practice. These things, and having some patience and empathy, can go a long way towards strengthening your support system and the relationships you have with each other. Communicating clearly and honestly will also help tremendously. Both sides have to be able to tell each other the truth about how they’re feeling, and their opinions/wishes. If you don’t, you can’t expect the other person to read your mind and know. It just isn’t reasonable.
Living the struggle of chronic illness is never going to be all sunshine and rainbows, but you CAN still have a decent life and find good people to enjoy it with. I hope this piece helps with that. If someone is unwilling to acknowledge, and at least attempt to understand the limitations you have, it may be time to consider if they are toxic to your health and happiness. People like us have enough to battle against. To the loved ones who really are there for us and do their best- THANK YOU. Without you our lives could be much harder. (To go back to the part for chronic illness sufferers, click here)