By Aimee Sterk, LLMSW, MATP Staff
Many of us feel as though we need to keep physical and emotional crises hidden, when in reality, reaching out is what we really need.
This past year I experienced two miscarriages, both of which required medical intervention and one required much on-going testing, treatment, and doctor visits. Both left me physically and emotionally drained and the first one knocked me into a long-term, full blown depression. I’m still dealing with the fatigue from the chemo and grief from the second one.
Also this year, a friend developed stage III pressure sores and was off of work for a long time while going through a divorce and caring for her young son. Another friend was in emotional crisis upon the death of her sister and the near-death of her husband. Another friend had to miss work because of repeated problems with the tilt on her powerchair. Another friend had repeated problems with her personal assistants that compromised her health and independence. A family member fought cancer. A church friend died of cancer. Another friend worked to care for her aging parents’ needs while also caring for her immediate family and keeping up with her work responsibilities.
All of us had physical and emotional needs to be met along with our everyday life needs. Some of us kept these needs hidden and paid a price in not asking for help. Others asked and used tools to get us through. Through these personal experiences, I found some tech solutions to cope with stress and depression, organize, and seek support. Here are 5 tech tools that worked for us:
1) Facebook: While there are many access issues to Facebook, and on-going efforts in this arena, Facebook was my lifeline. It provided a way to let people know how I was doing without having to interact individually with people, which I found difficult and deeply draining. Friends provided words of support that were helpful (and some were not helpful—read the 4 worst things to say to a friend who’s suffering). I had an outlet to feel loved and cared for when I needed it, on my terms, sharing what I wanted to share—and to easily give updates without having to notify people individually. Facebook also provided comic relief and a way to get out of my own head with funny videos, striking natural beauty, good news only options, interesting articles, links to helpful articles and blogs, posts of friends, and cute animal pictures and videos. I also like that you can block and unfollow negative/unhelpful people without having to use the mental energy to unfriend them and deal with the consequences. The virtual community on Facebook of people you may never meet in real life can also be a great lifeline. There are groups on all kinds of topics in which to seek support. Personally, I really appreciate a group for people with PCOS (polycystic ovarian syndrome) and Disability Thank You Notes (DTYN). DTYN is a closed group where you can share (in the form of sincere or snarky thank you notes a la Jimmy Fallon) and get support for all of the ableism we as people with disabilities have to deal with in daily life. This includes stress-relieving snarky fake notes to medical professionals who add to the trauma of your situation with judgments or condescension. It also includes sincere notes to other medical professionals who understand the intersection of your disability and your current medical crisis—I’ve written both. The people and comments in the group have been a great release valve and support to me.
2) PTSD Coach App: I’ve relied heavily on this app for managing symptoms of anxiety, sadness insomnia, and being reminded of trauma/triggers. It works well for PTSD but is really broader than that. Created by the US Department of Veterans affairs and offered for free for iOS and Android users, this app has been downloaded more than 100,000 times and is now available in French. There are 17 different tools to choose from and a desktop version as well. The coach allows you to choose what symptom you are having, then choose from a variety of activity suggestions including very nice guided imagery and breathing exercises; and suggestions to call a friend, or take a walk, or try a grounding activity they provide, or progressive relaxation. What I appreciate is it learns about you and tailors the suggestions based on the level at which you rate your distress. Then you can tell it if you like or did not like the suggestion. If you like the suggestion, the app keeps it in the rotation, if it doesn’t, you don’t necessarily see it again. You can take a weekly self-assessment to track how you are doing and if you are experiencing a lot of symptoms, the app suggests you seek professional and other support. It also allows you to create a support system list and you can select to call any of the people on the list right from the app.
3) Lotsa Helping Hands: This website is just plain brilliant. Several steps up from Take Them A Meal and more expanded than Care Pages, With Lotsa Helping Hands, you or someone you trust sets up a calendar of what you need and when—meals, rides, someone to sit with you, a babysitter for the kids during an appointment, chores, help with pet care while you are hospitalized; then friends and family members in your community of support can sign up for when and how they can best help. My colleague used this very effectively for several months during health crises of her and her husband. This answers the question/problem of people saying “How can I help?” and “Call me when you need me.” With concrete ideas. People help in ways that work for them and actually help you. There are also community building and sharing options where you can post updates, send well wishes, and share pictures.
4) At Ease app (iOS , Android, Windows, Blackberry): Shout out to Therese Wilkomm, director of the AT center at University of New Hampshire, for talking about this at her lecture in Michigan this fall. I now use it frequently. This app provides a great tool for getting started with guided breathing meditations and journaling for anxiety and worry. I have tried other similar apps but did not like the voice of the guide—though my colleague loves Relax with Andrew Johnson and his Scottish accent. I appreciate the calm and soothing female voice on At Ease app and the other supports like podcasts that Meditation Oasis provides on their website and Facebook page. Some are free and some are paid (hint the podcast app is for a fee but the podcasts are free on the website).
5) Wellness Recovery Action Plan (WRAP) app/book: There is an app version (iOS and Android) and print version of this tool I have been using for several years after a friend told me about it. Born from the mental health recovery movement and the Copeland Center, the WRAP is a vital part of this evidence based program that can be used by anyone at any time for any type of challenge. The app and system was developed by people with a lived experience of mental health disabilities but really works for any disability type. You use the program to develop a wellness toolbox—create a daily maintenance plan, list triggers/ways to tell if you are declining in any way, early steps to take to try to manage those symptoms, ways to tell if things are breaking down, action and crisis and post crisis plans. My biggest beef with the book was that I didn’t want to have to carry it around with me. Now, it’s on my phone and with me all the time so I can remind myself what the early signs are of my physical and mental disabilities flaring up and go through a list I created myself of tools to use to manage them.
What techie tools have you used to help you manage in crises?
What Facebook groups have you found with “like minded” people that have been supportive and helpful?Tweet