I want to offer a huge thank you to all of you who have been filling out my questionnaires. I had a great response to this 3rd questionnaire exploring the help you might need with the 8 steps towards living a great life despite chronic illness. (See these links for the results of the 1st and 2nd questionnaires).
I want to make clear to everybody that by exploring the emotional impact of chronic illness, I have no desire to add weight to obtuse misunderstandings that illnesses such as ME/CFS (SEID) and Fibromyalgia have psychological causes. There is no denying that, just as there would be an emotional impact to a physical change such as a loss of a limb, there is also an emotional impact to the dramatic life changes imposed by a chronic illness. It seems ridiculous to me that anyone could mistake these resulting emotions for the cause of that change and in doing so refuse to accept the mounting research explaining the biological causes. Just wanted to make that clear – rant over!
I am so thankful for all that you have shared with me in this questionnaire, I felt a great empathy for all the suffering that is experienced on top of the physical suffering. There was a great deal of similarity between the types of emotions experienced, however each of us is unique and I greatly valued the unique expression of your struggles. Unfortunately, in order to share the results in a digestible chunk I have had to reduce the flavour of your answers, grouping them together with others that were similar. However the rich variety of your answers was highly valued!
I’ve had 57 responses so far to this questionnaire, with all except 4 citing ME/CFS, SEID, ME, CFS, CFIDS, Fibromyalgia or MCS as one of their illnesses. Other illness mentioned included: Allergies, Anxiety, Arthritis, Asthma, Back pain, Bipolar Disorder2, BPD, Bulimia, Degenerative Disc Disease, Depression, Dercum’s disease, Dermatillomania, EDS, EHS, EMF, hyper-mobility, IBS, Neuralgic Amyotrophy, OCD, Osteoarthritis, Restrictive Lung Disease, SAD, Sciatica, Scoliosis, Stills Disease, undiagnosed autoimmune disease. There was a huge range in the length that the illnesses had been suffered, from 6 months to 42 years, the average being 11 years.
The first question asked respondents to rate on a scale of 1 to 10 ‘How skilled are you at dealing with the difficult emotions that accompany your chronic illness?’ with 1 being ‘I really struggle/feel constantly dragged down by them’ and 10 being ‘I feel like I deal with them very skilfully. Responses fell on the whole range from 1 to 10 with 4 being the most common answer and 4.3 being the average. 47 people responded that they would like to get better at dealing with the difficult emotions that accompany chronic illness, while 9 said they wouldn’t (1 respondent didn’t answer).
There was a huge range of responses to the question ‘Which emotions do you struggle most with?’ The most common emotions included frustration (33%); anger (30%) anxiety, nervousness or fear (30%); depression (18%); sadness/upset (14%) and stress (10%). Grief/loss, guilt/regret, hopelessness/despair and loneliness/isolation were each mentioned by 9% of respondents. Feeling not understood and feeling useless/lack of self-worth were each mentioned by 7%. 5% mentioned jealousy and 5% mentioned tiredness. Acceptance; helplessness; low mood; boredom; uncertainty/confusion were each mentioned by 2.5% of respondents. Other emotions mentioned included: annoyance; procrastination; not respected, ignored, looked down upon; disappointment and it being unfair. 5% said they didn’t struggle with any.
Respondents were given a check list and asked ‘Which of the following skills would you like to improve on?’
- Coping with an inability to be productive 38 67%
- Reprogramming unhelpful thought patterns 27 47%
- Improving motivation 26 46%
- Coping with loss 23 40%
- Positive self-talk/ positive reframing 21 37%
- Coping with emotional lability (exaggerated emotions) 20 35%
- Breathing and relaxation skills to help with anxiety 19 33%
- Befriending difficult emotions/ allowing them to flow and change 16 28%
- Changing limiting beliefs 12 21%
- Dealing with panic attacks 11 19%
- Problem solving skills 8 14%
- Using affirmations 6 11%
- None 5 9%
- Other 3 5%
- Being able to explain how I feel without alienating people
- Pacing
- Dealing with others
When asked ‘What would you most like help with in terms of dealing with difficult emotions?’ acceptance topped the leader board mentioned by 14% of respondents. Support/ encouragement and understanding/ someone to listen and not judge was mentioned by 9%. Lack of motivation/depression was mentioned by 7%, as was ‘none’. Coping with loss; boredom and frustration; communication skills/making others understand/being accepted; and anxiety/fears/hope for the future were each mentioned by 5%. 5% were also unsure. Other responses included: Coping with inability to be active/productive; Being able to roll with difficult emotions without sinking; Guilt/ for letting others down; anger and stress/not being snappy; effects on relationships; ability to not be OCD about things that effect my condition; feeling that life is worth living; everything (they are all connected); to be able to think straight and have time for myself; positive thinking; breathing and relaxation skills; meeting personal expectations; denial; don’t want people to focus on the emotional because the illness is physical.
The next question asked: ‘How do you imagine your life would improve if you were better skilled at dealing with the difficult emotions that accompany chronic illness?’
- Happier/ more content (9%); Calmer/ more serenity (7%); More positive (5%); More mindful; more positive about my future
- Able go out with friends/socialise (5%); Improved relationships with others (3.5%); have a normal relationship/better relationship with partner (3.5%); Better supported
- Get an education/ job/ make a difference to others/more productive (5%); Better motivation; Better quality of life; more realistic and fulfilling life; live rather than feel like I am just existing; Better focus
- Hopefully would feel more ‘level’/ reduce length and severity of crashes (3.5%);
- Less stress (7%); Not overwhelmed by emotions /less severe anxiety depression (5%); Less anxiety/less fearful (5%); Things wouldn’t get dragged on; Less guilt
- None (7%);
- better self esteem/ confidence/ feelings of self worth (5%); Better at putting myself first
- Not sure (3.5%);
- With less stress I could focus on healing
- Make the most of what you can do rather than what you can’t; Move on easier; Better organised
One respondent offered words of support for others: ‘As I’ve now found that peace all I can say to others is stop pressuring yourself, accept you’re ill, don’t hide it, ask for help if you need it, be honest with yourself and others, stop living life full of “what ifs” accept what you have now.’
Finally I asked again what kind of help would appeal to you and what kind you would be willing to pay for.
- Reading suggestions in a blog post, appeal 47%;(Not offered as a paid option as my blogs are free!)
- Self-study work books with access to an online peer support group, appeal 41%; pay for 19%
- Group coaching, including weekly live coaching calls, work books, access to an online coaching and peer support group, appeal 23%; pay for 21%
- Individual coaching, appeal 23%; pay for 35%
- Other appeal
- None (3.5%)
- No idea
- I think just general educating, my friend has taught me a great deal in recognising triggers and encouraged journaling
- Peer support group
