Day 89: How to Support Me Now That I'm Sick: An Open Letter to Strangers, Family, and Friends

Let's face it.  Lots of stuff stinks about chronic illness: the pain, the unexplained symptoms, the unpredictability, the worry.  When I first started to get sick, I had so many symptoms, I had to make a spreadsheet to keep them organized.  Now, after six months of not working, not participating in regular activities, not volunteering, and hardly going out, I have new concern.  But this one isn't an indicator of my disease, it's caused by it.

Being lonely is a human condition--even in the best of times.  I've been intensely lonely many times in my life--in a foreign city, when I shattered my knee cap, after a painful break up.  None compares to the isolation I've felt with chronic illness.  While some friends call, text, send cards, or drop by, others--in some cases those I thought I was closest to--have disappeared completely.

Even as I write this, I'm frustrated by humanity.  I get it.  People get weirded out by sickness. They don't know what to say. They feel helpless. They hate to see me hurting. They're busy.  They want to give me space. Blah, blah, blah.  But, for just a moment, I wish they would understand.

As I woke up at 4:22 this morning, I couldn't help but think of my friend Sandy who died of breast cancer in 2006.  Sandy was vibrant, brilliant, and amazing. By the time she passed, she was also angry.

During one visit, I remember her crying, bitter that all she thought once loved her were nowhere to be found.  "People ask what you need, then they don't do it," she sobbed as she recounted  asking someone to take her to the doctor's office.  "They said they couldn't do it and told me they'd get back to me with days they could help," she wailed. Sadly, Sandy never heard from them again.

While this sounds callous, it's not uncommon. In my own life, I've reached out to a few people with disappointing results. Just recently, I asked one of my favorite girlfriends to get me out of the house weekly (I haven't seen her since).  I've left another friend several phone messages.  Despite knowing I'm sick, despite being someone I used to talk to at 3 in the morning, she still hasn't called back.

Although it's easy to get discouraged or disheartened, I refuse to let it get the best of me. As they say, "sunlight is the best disinfectant" and the spotlight created by illness has definitely shown me who I can count on. 

Knowing what I know now, if Sandy were still here, I would do a lot of things differently. Which got me thinking.  If people knew better, maybe they would do better.  So, in an effort to help others and myself, I'm making two lists:  1) How to support friends with chronic illness 2) How to be your own best friend when you're sick (which I'll post tomorrow).

How to Support a Friend with Chronic Illness
Following is my list of things that have made (or would make) a difference during my time of healing. It's by no mean comprehensive, but it's a good place to start. 

1) Listen.  Ask how I'm feeling and just let me talk (without looking at your phone, rolling your eyes, or offering advice).  Some great questions: How are your symptoms today?  How is that impacting you?  How can I support you with that?

2) Remind me life is beautiful.  Bring me plants.  Send some wild flowers.  Email me positive music videos.  Tell me how what I've done in the past (or now) is making a difference.  Get me out and into the sun.  Make me laugh.  Do anything that reminds me life's out there and I'm still a part of it.

3) Anticipate my needs before I do.  What am I complaining about?  Is it my itchy skin? How tired I am?  My messy house?  My limited diet? The leaves in my yard?  Find solutions to my problems and take care of the details for me.  Say things like "Is it ok if I do x,y,z for you?" or "Why don't I stop by and take you to..." rather than asking general questions like "What can I do to help?"

4) Do what you promise. I know you don't know this so I am telling you. If we are meeting or you promise to do something, I am counting on it.  Sometimes, after getting the first sleep I've had in days, I set an alarm to make sure I'm awake for our appointment.  Other times, I'm waiting to take medications because we are going to eat.  These days, showering, washing my hair, or driving to meet you takes tremendous energy and can even be painful.  I schedule time with friends only once or twice per week for this reason (and I look forward to it).  Please be considerate of this and don't leave me: hanging/ditched/waiting.  It hurts more than you know.

5)  Understand when I don't.  I know it's unfair of me to ask you to do what you promise and to not necessarily do the same.  Depending on how I'm feeling, I may need to change things or I might even forget them (I sometimes don't remember what day it is). Check in with me the night before and see if I'm still up for it.

6) Check in on my spouse.  Being sick is tough on me, but it's also tough on my husband. On top of the business, which he now manages single-handedly, he does the shopping, most of the cooking, the cleaning, the dog walking, and the laundry.  Check in with him. Ask if there's an errand or chore you can do while you're out.  Take him out for walk or a game of volleyball or a movie.  Bake him cookies. Remember:  He's not only caring for a loved one, he's missing a partner and a friend.

7) Encourage me to control what I can.  Applaud my research.  Send me recipes for raw food items.  Remind me that I know my body and I need to trust myself.  Being sick requires hundreds of difficult and highly personal choices. There are no "right" answers.  Research shows patients who heal best are proactive with their health.  Respect and support my decisions...even when you don't understand them.

8)  Educate yourself.  Read The Spoon Theory.  If I am going for a test, educate yourself about it. Find out what people with Lyme Disease are going through (even if I don't have it, I share their symptoms).  Clip out articles I might find interesting and send them to me. Ask questions.

9)  Try to relate.  As a sick person, my life revolves around three things: getting better, researching what could make me better, dealing with symptoms/pain that are disrupting my life.  To you, what looks like obsession, is actually desperation to understand, control, or eliminate what's happening to me. I'm scared.  Some days, I'm hopeless.  I know you miss the old me. I know you may be sick of hearing it.  Have patience with me and try to imagine how you might feel if you were no longer able to work, get around, sleep, or control pain.  Now imagine feeling that way and having people look at you like you're annoying and crazy.

10)  Think about what you say.  Most hurtful comments?  "You don't look sick."  "Why are you doing _______?"  "Maybe it's in your head."  "Do you think you're just thinking about it too much?"  "Well, at least you don't have ________."  "I wish I could sit home all day."  "It can't hurt that much."  "Be grateful you aren't ______."  Don't compare my illness to yours. Don't say things like "I know what you mean"...unless you truly, truly do.

11) Tell me about your life.  Share what you're dealing with, what you are struggling with, let me know how I might be able to support you.  The only thing worse than feeling sick and lonely is feeling sick and useless.  Let me contribute to your life. It reminds me that I can still make a difference.

12)  Send me gifts.  Not expensive things, but thoughtful ones. Give things that keep boredom at bay: sudoku puzzles, movie gift certificates, amazon gift cards, magazine subscriptions (Health, Whole Living, Natural Health, Women's World, Somerset Studio®).  Or give things that I need or might want to try:  fresh, organic fruits and vegetables, raw almonds, prepared gluten free, sugar free, and yeast free meals, gift cards to Publix or Whole Foods.

13) Tell me you love me.  Write me love notes.  Sing me songs.  Remind me I'm strong.  Admit you don't know what to say.  There's nothing for you to fix and I don't expect you to have the answers.  Just check in with me, read my blog, and remind me that you care.

Altered Today: Asking for support and letting others know how they can give it.

Comments

[mo]

Hi, Just found your blong link on chronic babe. I'll be back to read more soon.
mo

[M. Antal]

Thanks for these tips on how I can support you! Love you!
M

[Kathy Tagudin]

You do all of them already, but you're welcome. ;)

[Ecaggiano]

14. try the yucky medicine :) ok, that's not on the list. And since I was late that day, it negates the self-sacrifice! Damn. I love you... and I'll rip the spine from a book up to prove it xoxox BTW: I'm up for dragging you into the sunshine. When & Where?

[Kathy Tagudin]

LOL Elaine. No, I think tasting herbs that taste like Feet and turpentine trumps being late. You're safe. And you're a good friend. That's the ironic part of writing this post. The people I most wish would read it, are the ones who won't. Anyway, no matter. I am really getting how important it is to focus on what I have vs. what I am missing. Text me about sunshine. I love you.

[Lynda M O]

An excellent list of support activities; thanks for taking the time to put it together. I agree that the people that need to read this the most-won’t !~! Sad and True. As a chronic pain patient and a care provider, I am especially interested in these lists from both perspectives.

[Joanna]

That is such a good list!
I too feel that friends have left as they just don't want to deal with me. A coworker remarked to another that meeting me for lunch was so depressing - no kidding. My life revolves around my illness and trying to find a way to get better, people don't get that.

I also love the part about your husband. I also feel like my guy is my rock and he totally gets it, but I feel bad that I'm not the woman he married.

[Kathy Tagudin]

I'm sorry to hear that, Joanna. I've had experiences like that too and it's awful. Maybe today's post can give you some ideas? I also get what you are saying about being a wife. In fairness though, we're always changing. You might not be the gal he fell in love with, but that doesn't mean the new one isn't wonderful as well. Just a thought.

Hugs, love, and laughter, Kathy

[Kathy Tagudin]

OOOOH Lynda...maybe you could put together a list from a caregiver's perspective? I now I drive my husband crazy sometimes. I would love to hear how I could make his job easier. Let me know if you're interested. I could post it as a link.

[Mary Kathryn]

Hi, thanks for your blog.
I found #10 particularly helpful. I have often pondered putting together
a list such as this on my blog...I feel inspired and perhaps I shall. I do have some friends who complain how hard my lengthy illness has been for them. :( I have several thoughts on that, but basically it boils down to this: they don't know what to do, and if I can be concrete about saying what I need, it may help them and me. Hope you are feeling OK/not-too-shitty/ today. Maybe one of the stories on my blog will give you a laugh or a smile. Hope so.
Best, MK

[Kathy Tagudin]

Thanks for the comment, MK. I had the same thought myself. When I sat down to write the post, I was initially feeling bitter, but as I got into it I really got "they just don't know...and it's my job to tell them." Love your blog, by the way. I have a special fondness for people who use the phrase "blah, blah, blah." So appropriate for so many things. Having a decent day...the kind where you're tired with just random symptoms here and there. Hope you are too. Stay in touch!

[Munteha Shukralla]

Thank you for sharing this with us all. I have no idea what it is like to deal with what you are dealing with and I really appreciate you communicating what I/we can do to support you.
Love, Munteha

[Kathy Tagudin]

Thanks for reading, Munteha. Miss and love you.