When your loved one becomes sick, they can be easily confused and struggle to express their emotions and experiences
Oftentimes when your sick person attempts to talk about their realities, their struggles, and experiences, it may come across as hostile, rude and ungrateful. This can be disheartening, frustrating and confusing for you, as you try to support your sick loved one.
It can be super frustrating when miscommunications occur with someone you love, who’s sick and easily confused or has a problem expressing their experiences or feelings as a sick person, which may be experienced as hostile, rude and ungrateful.
This is a common problem when your friend and loved one gets sick, you’re not alone. When your friend and loved one gets sick, they’re so different from the person you knew, before getting sick, yes?
You’re doing everything you can, saying everything you can to be supportive, but no matter what, your sick friend and loved one is grumpy or ungrateful or feeling isolated, even if you’re sitting with them. It’s so unfair, right?
What if you knew that your sick friend or loved one doesn’t realize they’re doing or saying anything offensive? What if they feel lonely and isolated because NOBODY they know, can relate to their experience, despite your efforts to be a good friend? What if it has nothing to do with you, and everything to do with coping with a rare disease that the majority of DOCTORS have never heard about?
If your friend and loved one had an addiction, you’d likely attend ALANON meetings. If they had cancer, you’d go to a family and friend support group and education to understand what your friend and loved one will be going through, to prepare you.
There aren’t many support groups for rare. If rare was easily understood, it’s more likely it would be common, not rare. This being said, there are ways to avoid a big chaotic fallout.
There are books like, The Four Agreements, which say a lot, especially the part of, “not taking anything personally”. The reason I can tell you this is relevant is because I have done this. I’ve made several mistakes with communication, most of the time, completely unaware that I said or did anything offensive, especially intentionally.
My neurologist explained to me, there are brain diseases that cause these issues, Parkinson’s, MS, brain cancer or tumor, Alzheimer’s and many other things like brain injury or senility. With someone dealing with chronic inflammatory illnesses, your body is flooded with cytokines which will affect how your brain works. It doesn’t matter if you have an actual brain illness if you have chronic inflammation you’re having cytokines gone wild.
Okay. So, these things can affect behavior, the manner in which things are said and a LOT, of hurt feelings. With this in mind, based on my own, personal experiences, I’ve come up with some ideas that will hopefully help you with your sick friend and loved ones.
1: Do you realize what you just said?
Yes, I said I can’t tolerate peas anymore and the soup has peas, so I can’t eat it, I’m really sorry you went through all that trouble to make me soup I can’t eat.
• what was actually said, “I can’t eat peas!!! I told you, I can’t eat them, why would you make soup with peas?!?
The inclination here is to become defensive. I mean you spent all this time making soup, and you were yelled at for it! They’re so ungrateful and rude! Forget it, I’m not putting up with this shit anymore!
Consider instead saying, actually you seemed really offended that there are peas in the soup, are you angry I didn’t know about the peas? This is the first time I’m hearing about peas not being tolerated.
This actually did happen with me, (not with peas, specifically), but a food couldn’t be tolerated and I felt horrible that they spent all this time making something and I didn’t want to seem ungrateful. I felt guilty. I’ve was sad that I couldn’t enjoy this dish, despite their best efforts and I felt terrible. Of course, I felt worse, hearing about all my offenses, months afterward. I would’ve really appreciated the opportunity to redirect my response to the actual intention.
2: Did you really mean what you just said?
Perhaps your sick person just said the only thing that gives their life any meaning, was their job, travel, hobby, etc. that they can no longer participate in.
Asking your sick person if there is any in their life they do value, could become a trap. Remember, they’re sick, miserable, in pain and frustrated, mourning their life previous to getting sick.
Consider asking them what are some things you’re grateful for, despite the losses. Ask them if there’s anything that could make up for the inability to do some of the things they can no longer do.
Remember, working, being productive and an active part of life gives many of us a sense of humor purpose. Accepting the new reality is difficult, but you don’t have to be a punching bag. You can say, I’m doing the best I can to show you love and support, but when you say something about how meaningless your life has become, it hurts my feelings, because your family and friends love you, and I hope that can be enough.
You’re setting a boundary, expressing feelings and reminding them that even though they can’t do everything they used to love, you still love them.
3: when you need to take a break to take care of yourself
There are a couple of ways to do this, one that will be extremely painful and another that presents an opportunity.
If you say, “honestly, I need a break from you”, it’ll hurt your sick person, more than you could realize. Most people long to be who they were before and hearing this will make them feel like a pariah.
Instead consider saying, I’m feeling very overwhelmed and I need some time to myself to get balanced, I love you, I care about you, so I need to do things to take care of my mind and body.
This is taking responsibility for yourself and not blaming the sick person, who already feels like a burden and likely very hopeless. Taking time for yourself and self-care is critical! Much like children, it can take a village to assist your sick friend or loved one, so maybe arrange for another friend to come by for a visit, or if you know there’s an appointment coming up, see if said, another friend, can take your sick person to the appointment and assure them you’ll see them soon.
4: you just planned an event, you’ve done all this work to try to create something super special for your sick friend, unfortunately, they’re complaining, a LOT, during this event.
How discouraging right? You’re doing something so thoughtful and literally, all they can do is complain and really, she’s CRYING? WTF, I tried so hard.
And it’s true, you did try hard, and it’s likely that they’re trying hard to cope with pain, fatigue, side effects from medications and the event is something they REALLY, REALLY WANT TO ENJOY… but they can’t. They’re so sick, so miserable, they can’t enjoy it.
You may be inclined to say, “we’ve arranged all these things for you to be as comfortable as possible”, which is true. Likely, all your sick person will say or think is, I’m failing at something else, again.
Instead, consider asking you sick person if they feel loved, supported or cared for. Acknowledge that this must be frustrating to not be able to enjoy something you know they loved before getting sick. If the tears of frustration begin, acknowledge that it’s frustrating to not be able to feel good doing something you love.
Most importantly, don’t take it personally. You didn’t fail your sick person, their disease has been their life betrayal, not you. Know that your love is what resonates the most. You may need to remind them, gently of this.
5: you just received a verbal lashing
This one is LOADED. Nobody deserves to be yelled at, for something you didn’t cause and it’s quite likely your sick person is so frustrated, and they’re so comfortable with you, they just took out all their anger on you.
My suggestion in decoding this is to say, “I didn’t deserve that, I need a minute”. They may seem confused or indigent, it may or may not be intentional, but you’re not in a good emotional place to work through this, in the heat of the moment. Your feelings are hurt and you’re exhausted and frustrated by trying to prove your love to them, time and time again, and all you get is guff.
After you’ve centered yourself, approach your sick person and find out what and why they’re actually upset. Find out if they meant that you’re a useless jerk who never listens and doesn’t care about you.
You might be surprised… you may be surprised that you’re not the problem, that maybe it was a nurse who missed their vein, several times after they told the nurse that vein has too much scar tissue or a doctor who just told them to take a walk and they’d be all better, or maybe someone told them that if they just followed Keto or whole 30, they wouldn’t be sick anymore. Maybe someone told them that their godless ways are the reason they’re sick.
Sick people often feel blamed for being sick. But it’s not your place to be their, “whipping boy”, so, ask them, when you’re ready, why they said those things.
First off let me say there are some truly cruel and insensitive people who are very cruel to their sick family members. Sometimes someone is truly being horrible, which is likely because they have emotions they need to work through personally.
If that’s not the case with you, it’s likely they’re yelling at life, not you. Usually, it’s unintentional that your sick person delivers harsh personal digs, but it’s important to discuss and SET BOUNDARIES!
You can start by asking if they truly feel like in terms of their dynamic with you. Ask them how their mind is that day. How do they feel, can they think clearly. If the answer is that their mind is in a good space, tell them what you experienced.
You may want to preface it with, “it really hurt me that you said those things to me the other day, is this truly how you feel?”
If they don’t remember, trust me, it’s not how they feel. If they do remember then try to listen with the most compassionate filter you can muster. Because it could go like this; I had such a terrible day, I was in so much pain and you moved my heating pad and I couldn’t find it!
Super easy to take all of that personally. Maybe you were trying to help make the space nice and organized and it just backfired all over you, and you didn’t deserve it.
Here’s where you set your boundaries and validate them…
Understand that extreme fatigue is real. Things, like taking a shower, then getting dressed then getting their drink, is the equivalent of climbing a mountain for 12 hours straight without a break. Just for reference, I was once a martial artist, single mom, who would train 6 hours daily, prepare meals, work, pick up your kid, did housework, homework and still have a social life… so I do have some perspective because it’s truly humbling when a shower is so exhausting. So maybe the fact they couldn’t find their heating pad just put them over the edge.
The boundary; I’m not going to do nice things, if you yell at me, but, how you say it is really important… I want to help you and do nice things for you, but yelling at me hurts. Do you want my help? If the answer is yes, then say, when I clean up or organize something, I’ll put it in the same place, I need to know where it’s easiest for you to remember. If you’re having a difficult day, it’s understandable to be frustrated, but yelling at me only hurts me.
This is validation and a boundary. Abuse is unacceptable, and if they’re confronted with abusive behavior and they continue with that behavior, you will need to separate yourself from that. But don’t assume that your sick person knows they’re being abusive or rude, it’s not about you, it’s about their suffering, it doesn’t mean you should accept it or walk away with sore feelings. Remember… you’re all navigating through a difficult, unknown situation.
6: find a medical psychologist
Sometimes the issues and communication are so complex and confusing, using a mediator whose expertise is in dealing with debilitating, chronic illnesses are the only way everyone can be on the same page.
If most doctors don’t understand these illnesses, how are you expected to know how to deal with your sick person?
7: have faith in your sick person
If your sick person was a kind, loving, caring and happy person before getting sick, all those qualities still exist, even though they seem to have disappeared entirely.
The things your sick person could tolerate in life before getting sick, change. Your sick person is more sensitive, more scared and likely very traumatized by medical chaos.
Meeting your sick person where they need to be met, makes all the difference. Bad TV? YES! Bringing a crappy video game? YES! Sending stupid memes? YES! Taking to the movies on a good day? YES! Arranging an outdoor activity, during a nice weather day? YES! Taking a short, yet scenic drive? YES! Bringing a puppy or kitten or better yet, a new baby over? YES!
Bottom line, we all need life affirmations, despite limitations. In this time of division, where you’re considered, “toxic”, for thinking or believing something different from others is a new way, and only increases loneliness for EVERYONE.
When you connect and learn to communicate with your sick person, you’re teaching your children and community about love, tolerance, acceptance and that above all else, to quote Fred Rogers, “when it’s mentionable it’s manageable”. Let love rule, everything else is ego, and harmful to everyone.
Thank you for being a teammate to your rare disease warrior, it’s not easy, but it’s likely worth it if they’re someone you love.
Chronically Fabulous Warriors 