Sometimes, the worst thing about being chronically ill is not even the disease itself - but the way it changes your definition of who you are. The healthy you is gone, replaced by the sick you and now you have to figure out how to live.
Furthermore, because humans are social animals, the way we view ourselves is inevitably wrapped up in how others perceive us, or even how we imagine others are perceiving us. The opinions of our friends and family, our community, are particularly powerful in shaping our self-esteem.
I define community as a group of people bound by common interests and goals AND a web of interconnected people and obligations. It’s both these things. You can’t have the good without that bad. Friends give you birthday presents, you should also give them birthday presents. You pick up your mom at the airport, she picks you up at the airport. This is pretty basic stuff that everyone can agree on.
However, the problem that many chronically ill people face, is that suddenly, they’re only on the receiving end. They are the weak link. They become, against their will, the ones who are not “pulling their weight” so to speak, within a given community. And it may never change. There is a creeping horror of always being a “taker” and not a “giver.” What will happen? Will people get sick of me and my problems? How can I ever repay these debts?
Personally, I battle feelings of guilt all the time - for not being physically, financially or emotionally able to help my close friends and family during their hard times. I can say without a doubt that this is the single hardest thing about being chronically ill for me: the guilt and shame associated with not being able to help those around me.
Today, I thought I’d share a few of the tips and strategies I have learned in my journey.
1. Define your community in realistic ways.
Think about it: who is really part of your community? Your close friends and family? Of course. That guy you went to high school with who you haven’t talked to in ten years? Probably not. As a sick person you have a limited amount of energy. Do not waste it on people who are not actually part of your life.
2. Be realistic with yourself.
For example, about a week ago I read a Willamette Week article about homelessness in Portland. I got so fired up, I thought: I am going to volunteer! I am going to battle this fucking homelessness problem in Portland! This is outrageous! I am going to be the best advocate ever for the homeless!
Of course, ten minutes later reality set in. The thing is, when I was younger and healthy I was always volunteering. I had my job, my artistic endeavors, and then I would volunteer somewhere. I did this for years.
When I got sick I had to quit all of that. But my mentality hadn’t changed. Somewhere, deep down, I still thought I should be volunteering. I had to confront this notion in order to move on. Acceptance really is the best medicine.
3. Be realistic with others.
If you get tired easily or have a bad back, don’t volunteer to help someone move! If you have limited energy and crap out after an hour on your feet, don’t volunteer to be your friend’s wedding photographer! It’s so simple - and yet, why is it so hard not to overcommit, fudge the truth or be insanely optimistic about the state of your health?
It’s because to the chronically ill person, being realistic feels like defeat.
It’s hard to admit sometimes that you are not able to do the the things a healthy person can do or what you used to be able to do before you got sick. But believe me, it’s ten times better to be honest and upfront, rather than disappoint someone later. If you are afraid of being honest with those in your life about your disability or illness, you may need to rethink some things: your communication style, your friend choices and possible family dysfunction. (Way too much to tackle here!)
4. Get out of Denial
Anyone that has watched an episode of Hoarders knows that the difference between being in denial and being unrealistic is a matter of degree. You can be an unrealistic pack-rat with too many art supplies (me!), or you can be a hoarder, in denial, drowning in old newspapers and rotting food. When you are in denial, you don’t even know you’re in denial. So it’s much harder to change. Usually you need something very jarring to make you come to your senses.
For me lately, it's been drinking too much and getting very, very depressed. After a day of crying, I was like, Duh! Martha - you have a chronic illness, you cannot keep doing this to yourself!
It's too bad that it usually takes something catastrophic to get us out of denial because this may be the number one thing you can do to be a better community member; what if we all went around pretending that little Suzie was capable of making adult decisions, or that Grandma was as healthy and spry as a thirty year-old? Things would not run smoothly in our community! It’s important that you get out of denial if at all possible.
Also - remember that not being in denial is not just a one-time deal. It’s an ongoing process. A constant battle. Like my mother said, “being in some level of denial is the default mental state of all humans.”
Because, let’s face it - everyone needs a little bit of denial just to function and not be miserably depressed all the time. I am as guilty of this as anyone else. I smoke cigarettes sometimes. Like I said, sometimes I drink too much. Sometimes I don’t eat right. I have to get real with myself constantly. Like I said - no one wakes up one day and says, “I’m out of denial. Smooth sailing forever.” I wish life was that simple, but it's not.
5. Take care of yourself first.
This is true for everyone, even if you’re not ill.
Members of your community are not going to hold it against you that you can’t help them landscape their backyard if you are in wheelchair. However, if you aren’t taking care of your mind, if you are so depressed (like myself recently) that you are an emotional basket-case because you haven’t taken your medicine or are drinking too much.. well, it might start to get a little taxing. You have to do what you can to help yourself, before you can try to help anyone else.
The truth, is most healthy people are not held to this standard. Their problems are temporary (acute vs. chronic) and so more easily forgiven if self-induced. But unfortunately, us sickies have a higher degree of scrutiny put on us because we are always one step behind the healthy. This is not going to change. This is human nature. It’s best to just accept that people are going to be more judgmental of you if you are chronically ill. They don’t know what it’s like to have a chronic illness, or a permanent condition. A lot of people will think, deep down, that they can still fix you somehow. Don’t hold this against them - however don’t give them any fuel for their misconception by not doing all that you can to help yourself.
6. Be a creative problem solver.
When you are chronically ill, you have to get creative. Your old ways of doing and functioning are not gonna cut it. However, as you are less able to help in old ways, you may be able to pick up the slack in new ways.
This especially hard for people who are natural “doers.” These are the kind of people who might not listen to you process about your boyfriend for hours, but will bake you a cake or help you move. These folks are good-hearted and action-oriented. They like to fix problems and be the hero. However, when they get sick they can’t be this kind of helper anymore.
Nevertheless, despite your innate skill set, instead of feeling sorry for yourself, you should try to find new ways to be of help. Cultivate your empathy skills; be a shoulder to cry on. Try to become a better listener. Send people cards and letters to brighten their day.
Be a warm body. For example, tonight I am staying the night at my sister’s house to take her kids to school in the morning. This requires hardly anything of me physically besides my presence. And at the same time, I know I am helping her out a lot by doing this. The same goes for housesitting, pet-sitting etc. Just showing up - that can help a lot.
Use your energy when you have it. When you are chronically ill, your energy levels are unpredictable. Sometimes you can feel okay, other times you’re totally exhausted. When you do have energy, take advantage. Don’t just sit there and watch TV! Clean the kitchen, sweep the floor, call a friend who is having a rough time.
Pass on knowledge. You never know who you might help by suggesting a certain yoga regimen or a great local restaurant. Take on a research project for someone. Make some phone calls. Sharing your knowledge and the connections you do have is a relatively painless way to help. (I am not advocating giving unsolicited advice. As a chronically ill person I know how annoying this can be, having been on the receiving end so often!)
Be a matchmaker and not just the romantic kind- this could mean introducing two musicians to each other so they can eventually form a band, or helping your hairdresser friend land a new customer, or even giving a book to a friend and saying, “When I read this book I thought of you.” People will appreciate that you know them well enough to match-make for them and even if you miss the mark, at least you were thinking of them and not yourself.
7. Stop complaining and just do it.
You knew I was coming to this right? Eventually, and at some point, you are just going to have to contribute to your community even if you are feeling horrible. We all know how this goes: you feel like shit, but it’s your grandma’s birthday. Or your mom is sick and she has no one else to do a, b or c. You have to show up and you have to show up and not complain.
Anyone who’s been sick a lot knows that, in the end, not complaining is good for you too. I know I get sick of hearing myself complain all the time. And members in your community will get sick of it too, not because they think you’re lazy or faking it, but because what can they really do to help you? Probably not much. Save yourself and them the grief. Sometimes you just have to suck it up and perform.
8. Don’t be a martyr, don’t emotionally manipulate people.
This point may seem kind of obvious. However, I think everyone who is chronically ill needs to be honest with themselves about some things. Our illness puts us at a great disadvantage but it also gives us the power to emotionally manipulate people because they feel sorry for us. Geez, I know this is true because children and grandparents do this all the time!
I recently decided to join an online community for people with Addison’s disease, (sufferers of chronic adrenal insufficiency - which is what I have, now that I don’t have adrenal glands,) and the facilitator of the group makes everyone sign an agreement stating that we're not going to be martyrs. There is a long detailed list of behaviors that will deem you a martyr. She even says she will kick you out of the online community if you are behaving in this way. I thought: wow! This lady is not messing around!
I sat there and stared at the screen, reading and re-reading her contract. I had never considered myself to be a martyr but I had to take a long hard look at myself before signing on. I had to really investigate my motivations - Was I just wanting a place to complain and not seek solutions? In the end, I signed the agreement, but I thought it was a great opportunity for me to not only reflect on my own motivations, but also a clear-cut way to lay down the rules of a community.
Because, even in a community of chronically ill folks, there has to be a balance of giving and taking. And I think more than anyone else, us sickies know what is at stake in a community. We know the true power of community because we have been buoyed by the grace of our friends and family for so long. More than anyone, we can’t and shouldn’t ever take it for granted.
So I’d just like to say: thanks so much to my community! I love you more than words can say!
Further reading: The Chronic Illness Workbook - Strategies and Solutions for Taking Back Your Life , Patricia A. Fennell, MSW, CSW - R