Every time I wake up, there seems to something new to contend with, a new ailment, side effects &/or condition, which means visits with more ‘ists and ‘ologists.
This was not in the script I had envisioned for my life. None of it. Who would choose chronic illness, chronic pain and all that goes with it? No one.
Aside from the physical and mental issues that comes along with my daily life, probably the hardest for to me face and deal with – is the reality of who my real friends are, and which family really cares, and which don’t. If they haven’t called or reached out, they are acquaintances, not friends. That’s fine, I just realize how skewed my numbers were in regard to the friend:acquaintance ratio.
Never in a million years would I have thought I would be so hurt, by those who claim to love me. I’m guessing you can relate. This isn’t how it was supposed to be; yet here it is – A monster that I, and millions of others, have to deal with every single day.
The Silence is Deafening
Most of my friends are not in chronic pain. I’m very relieved this is true. I would not wish illness and pain on anyone.
Yet, I hear rumblings & rumors that some don’t believe that I’m sick at all! I’m not sure what sick, and in pain, people are supposed to look and act like 24/7/365, but according to some, I’m not doing a convincing enough “act” to convince them of my ailments. They are not doctors, they are loved ones. They are cynical skeptics. They lack empathy and compassion.
My response is simply this: it’s amazing how chipper you can appear online, with smiley faces, sharing puppy videos and funny memes.
My illness is not invisible. See me in person, and it’s blatantly obvious the pain I have.
Perhaps those who doubt, can’t handle the truth. It’s not my job to convince them.
Ain’t nobody got time for that!
The general lack of empathy and compassion towards us, is amplified within the lonely isolation of chronic illness and pain, and can give way to thoughts of frustration, despair, regret and guilt. For me, this happens during the many hours in my “cave”, when I am utterly alone, in pain and deep thinking. Wondering – why am I sick, what did I do wrong, how many more failed treatments until we find “the one”, and will it ever get any better at all. To even more distressing thoughts of, why have my friends abandoned me and would my family be better off without me.
When family & friends stop asking how you are, stop calling, stop coming to visit or reaching out in any way; then irrational guilt sets in.
The key word in all this is: irrational.
Not logical or reasonable.
synonyms: unreasonable, illogical, groundless, baseless, unfounded, unjustifiable
The truth is I am not responsible for what others think, feel, perceive or believe about me . That’s their business, not mine.
It does hurt. It’s disappointing, frustrating and all the feelings that going with rejection, abandonment and/or the “cold shoulder”, from those who you thought loved you. But it’s not your fault.
Proceed With Caution
What you choose to share about your life, health and struggles is entirely up to you. I do believe that we need a close circle of loved ones (and loved ones are not always blood relatives) that we can confide in safely, and without worry or concern as to what their reaction might be. This is vital for our well-being to have that support network.
All that said….
There’s No Free Pass for You
Just because you are ill, doesn’t mean you are exempt from having empathy or concern for anyone else but yourself. Even in illness, life isn’t all about us.
I truly believe that our loved ones want to help (many of them), but they just don’t know what to say, or do to help us. Fear of saying, or doing, the wrong thing is what prevents many of them from staying in touch.
Don’t completely shut down and close everyone off.
It’s always best to be the example you wish to see in others. – Traci Knoppe
It will make you feel better to see how someone else is doing. Send them a card. Reach out to let them know you are approachable and reachable!
Yes, there are some “loved ones” who are just mean jerks, and honestly, you need to focus on what you can change, not what you can’t change.
Do your best, and all the rest will follow.
Recommended Support Networks
Speaking of support networks. There are many types.
- In-person groups. It depends on your medical condition, and how well you can travel, to know if a local support group is good for you. Contact your doctor’s office and/or local hospital to find support groups near you.
- Online groups. Facebook groups is probably the most available, active and convenient for most people. Not all Facebook groups are created equal. Some are brutal. You would think the suffering would be kind – but hurting people, hurt people. I suggest you search for a few groups for your specific health condition, or more general groups that may discussion several health conditions you have, join and then observe for several days.
- Watch to see:
- How active is the group? Are there daily posts. If someone posts, is that post responded to very soon after posting, a few days or never. No point in joining a support group that doesn’t offer support.
- Is the group Public or Closed? What’s a Secret Group?
- Public groups means that anyone on Facebook, can see everything that is posted within the group. No privacy at all. I don’t recommend Public Facebook groups.
- Closed groups means that you can search Facebook, find the group, request to join – but until your membership is accepted, you can’t see anything posted in the group. You can view who the members and Admins are – but not anything posted. Once you are accepted into the group, no one else can see what you posted; unless that person is also a member of that same group.
- Secret Groups. These groups do not show up in Facebook searches. The only way you will know these groups exist, is if you are sent an invitation by an Admin of that group. It’s uber secret and private – but also hard to find and join.
- Watch to see:
- Private Online Chats & Messaging.
- Facebook has a Messenger system that is awesome for personal discussions. You can even create discussion groups.
- Google Chat is another messaging system to use.
- Skype is another that does both chat and video communication.
Chronic Illness Life HACKS : Closed. Support for all chronic illness & pain conditions.
Spoonie Mail – SPOONIES ONLY: Closed. Chronic illness pen pals.
The Daily Migraine Online Support Group: Closed. Migraine support.
Occipital Neuralgia: Closed. Occipital neuralgia support.
A New Path
One thing I hear most, from those with chronic conditions, is how hard it is to get used to their new reality. They didn’t want this. Many don’t even recognize the person they used to be. It’s not hard to imagine how much harder it is for loved ones.
This is called a Life Plot Twist. The script and path you had intended, has been altered. It’s not fair, but we need to find a way to cope and adapt, or else we’ll be swallowed up. We need to find a way to adjust to our new path. Support groups can really help with that. They can help you, and your loved ones, understand and adjust course together.
Do you belong to any support groups? If so, please comment below and tell me about your group. Is it offline or online?