Tips for living well with chronic pain or disability

Living with chronic pain, a disability, or both, can be a real challenge, especially in a very demanding environment like college. Let’s define our terms a bit first, and then identify some strategies that might help. This can also be a good resource for individuals with pain or disability to send to their friends, so they can get ideas on how best to offer support, as well as learning more about what might be going on with their friend.

Chronic Pain

Chronic pain is basically just what it sounds like: pain that is not acute, or happening in the moment and then resolving permanently, but rather pain that happens roughly all the time. It usually ebbs and flows depending on numerous factors, but it is something of a constant in one’s life. Chronic pain often accompanies other conditions that have their own symptoms, like fibromyalgiachronic fatigue syndromeEhlers-danlos syndromemultiple sclerosislupus, and many others. It can manifest in very different ways: aches, sharp or stabbing sensations, burning, electric shock sensations, headaches, tension, numbness, and more. A person with chronic pain may or may not know the cause of their pain, and often struggle to find proper diagnosis and treatment.

Disability

A disability is a physical or mental condition that limits a person’s movement, senses, and/or activities. Types of disabilities are as numerous and varied as human beings are. One very important thing to know about disabilities is that they are not always visible. A person with a disability may, for example:

  • run marathons but struggle to use a computer keyboard
  • be deaf while speaking clearly and reading lips – in fact, many deaf people do not feel they have a disability at all, but merely speak a different language
  • need 12 hours of sleep a day in order to function
  • be legally blind and make beautiful visual art
  • be a math whiz and unable to read a full paragraph

Tips for living well with chronic pain or disability

  • Your illness, pain, or disability is not your fault.
  • Your body is not your enemy. Learning to appreciate what your body can do and accommodate what it can’t is a big part of the journey. Finding ways to love your body can go a long way toward making your life livable, or even great.
  • Seek and sustain supportive relationships in your life. Don’t be afraid to ask for help.
  • Do what you can to find acceptance of the current moment and your current state. This is not giving up and it is not accepting that you will be in this state forever.
  • When your body says no, you say no. Learning to set and hold boundaries is hard, but it is your responsibility to your body and your health.
  • Be attentive to behaviors that set you back physically or mentally, and seek understanding of why these behaviors may seem appealing. Eating certain foods or pushing yourself to do painful activities can be a form of self-harm, self-punishment, or a need for comfort that is going unmet.
  • Ask for help. It’s worth saying twice.

How to help friends and loved ones with chronic pain or disability

Like all of us, a person with a disability can do some things and not others. They may use assistive devices like wheelchairs or walkers, resulting in discrimination and microagression from others. They may easily “pass” as able-bodied, which can be exhausting on its own. Here are some ways to support a disabled friend:

  • If they have recently been injured or received a new diagnosis, remember that they are still the same person they were before, and treat them accordingly.
  • Allow space for them to discuss their disability with you, but do not make it a constant topic. Be receptive and responsive to their needs. They may need to talk, or they may really just need some normalcy.
  • It’s okay to seek support from them for your own needs.
  • Try to see the whole person instead of just their disability.
  • Once you are familiar with their needs (a gluten-free diet, a wheelchair ramp, a building with elevators, low lighting), be proactive about making sure places you go together are accessible and comfortable for them, with something they can eat, if food is being served. It’s okay to ask what their needs are, if you don’t know. Especially if it’s a party and you’re the host!
  • Understand that responses may be delayed or plans may be rescheduled due to flare-ups that are beyond your friend’s control. Have compassion and patience when they need to rest

What is a Spoonie? What is the Spoon Theory?


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