As most painiacs know, chronic pain doesn’t only affect those who suffer from it, but it also affects their loved ones, friends, and family.
When my pain was at its worst, I was a graduate student living alone in San Francisco on the top of a very steep hill. I spent most of my days in a wheelchair and tried to keep my tasks manageable, but I often couldn't execute "simple" everyday tasks, such as the dishes, cleaning the fridge, taking out the trash, etc. I felt like I was a burdening my friends, family, and my boyfriend. It seemed like I was always asking for help, to the point of sounding whining and appearing weak and helpless. I tried to appear as strong as possible, and I didn’t fully communicate my pain and my struggles, so as not to scare off my friends. Instead, my plan back fired and I ended up isolating myself because my friends weren’t fully aware of just how severe my situation was. Sometimes, I would have to practically beg someone to come to my house and wash my dishes or take out my trash, or buy me some toilet paper; things that I was incapable of doing while in a wheelchair.
Asking for help felt unnatural to me. I was always the one who liked to provide support, not ask for it. For much of my life, I had identified as a “do-er”: someone who is on the go and who enjoys getting things done. I became depressed and frustrated with myself and my situation. I started to distance myself from people for fear that I would be judged for not being capable of doing “simple” things and my boyfriend and I broke up.
Then one day I started to envision the future and realized that I couldn’t continue on isolating myself just because I didn’t feel comfortable asking for help. It felt like I had woken up from a hazy dream and that I finally knew what I needed to do. I needed to help myself, which meant that I needed to effectively communicate to and inform those around me, so that they could properly help me help myself.
I started writing emails and letters to my friends and family (both near and far). I made lists. I shifted my thinking about what it means to really ask for help, and I realized the power that can come from it. It’s a power that means: “Hey, I value this body and I need to care for it. Right now, that means that I need someone I trust to help me practice some self-care.”
I started to recognize that by isolating myself from those around me, I wasn’t doing myself or them any favors. To some degree, I was discounting my relationship with them out of fear that they wouldn’t step up to the plate.
Toni Bernhard, author of How to Live Well with Chronic Pain and Illness, writes: “asking for help can be an act of kindness towards others, allowing them to help when you’re struggling with your health makes them feel less helpless…” Bernhard continues by saying: “think of your request as a gift from you; it gives this person a way to not feel helpless in the face of your health challenges."
Here is my suggested plan of how you can ask for help:
First, start by noticing things that you do (or try to do) in your daily life that could be done by another more able-bodied person, or even shared with them.
- Make a list of all of the people in your life who may be able to and willing to help you.
- Consider including those you love who are both local and long-distance. At times, I really needed someone to call me each day to just connect over the phone or skype. I spent so many days alone in my apartment than I often didn't interact with another human for days. It was practically life-saving for me to hear from a friend or family while confined to my home.
- Make another list, but this time list things with which you need assistance.
- This might include things like grocery shopping, dishes, going out to lunch, walking the dog, to driving you to doctor appointments, or picking up your mail, etc. Be creative. It can even include things like a weekly phone call where you and a friend do a crossword, or watch a funny movie on Netflix "together". This is all about doing what makes you feel supported and less alone, helpless, and overwhelmed.
- Write a letter to your partner, best friend, and other loved ones you identified in #1.
- Be as open as possible and remember to be yourself. If you feel comfortable, a dash of humor and good-natured playfulness can go along way. However, you'll still want to maintain the importance of the subject at hand. Also, I suggest a letter, instead of email, because I believe that, in our digital age, a letter carries so much more value and begs for more attention and reverence.
- Let them know about how challenging you’ve found it to ask for help.
- Tell them you appreciate their friendship, and that you hope that they can continue to stand by you during this really difficult time. It's important to help them understand that even though you have pretty significant changes to your body and capacity to do things. you are still you.
- Here's where you can talk about whether or not you are feeling supported by them at this time, or if you feel distance. It can help them to better see if they are being there in the way you need them to. Some times, friends think they are being supportive, because they aren't changing how they've been there for you in the past. But, now that chronic pain has crept in, it means that you most likely have different needs than before and this changes your relationship. You can also share with them about how your mood and energy levels may have changed because of the severity of the pain.
- Choose a few things on your "things I need help with" list that this individual might be able to do with or for you.
- Be direct. Tell them what you need and when and ask if you can call on them for this specific help.
- Ask them to feel free to suggest any other things that they might be willing to do with or for you. Personally, I was really keen to ask two friends to just take me out of the house each week for tea or lunch. It was a blessing!
- Close the letter by genuinely thanking them and letting them know that they can ask you any questions about your condition and what you are able and not able to do. This will help to properly inform them of your current needs and challenges.
Remind yourself that you are doing this out of love for yourself (self-care), and the love of your friends and family; you want to be open and honest with them, so that they can help you be your truest self, even while living with pain.
When you do receive help, say thank you. Genuinely. But, be careful to not over do it, a simple note or phone call, or small gesture like lunch or a treat can be all that they need to know you appreciate them.
In the end, I did receive quality help from many dear people who, when asked for help, took the time to listen to my needs and then find creative ways to support me. Our relationships grew stronger. However, not everyone was as receptive as others. It can be very difficult when a relationship suffers from any struggle, in my case it was chronic pain. I was in my early and mid 20s and many of my friends just didn’t understand how, why, and what I was feeling. It became easier for many of them to just distance themselves. As devastating as this was (and it was really, really sad), looking back, I realize how it made my other relationships that much more solid and special.
Now, years later, I have dear friends who held me up when I was at my worst. And, I’ve even been able to return the favor to some of them, being there for them during their own personal challenges, whether it be physical or emotional. I found it important to remember that you’ll be there for them in your own way.
My relationships are stronger because of it. I now have a loving fiance who is fully committed to understanding my needs and finding ways to support me, while making sure that I am also taking time to care for myself and be productive in my own way.
The experience of learning to effectively communicate my needs and ask for help has taught me more about myself (I’m a strong, capable person who values my health and my well-being), and what I want in a friendship (two people who are unconditionally supportive of one another).
Tell me, how do you ask for help? What does help look like for you? Let me know in the comments below.