My Family by Choice, While Living with Chronic Pain

My Family by Choice, While Living with Chronic Pain

For years, I have had two little signs hanging in my kitchen.

You Do Not Get to Pick Your Family, but you Do Get to Pick Your Friends” and “Families are Forever”.

Both sayings are meaningful to me because they reflect a reality, we all live with. We all share being brought into life by a family over which we have had no control over and a chance of developing friendships that we chose.

We are born into our families and are not given the opportunity before birth, to pick our skin color, our social status, where we are to live, or who will be our family members, etc. Some are more fortunate and can develop an emotional closeness with their family members while many others are able to achieve this. Thus, we need to take advantage of the honor of having control over who we pick as our friends. And in time, in many cases, these selected friends may be defined as “Our Family, by Choice”. However, in the end, no matter how neglected, abused or lonely one may feel from their family experience, they somehow are still part of our life experience and we do have them in our hearts forever, whether we want that or not, or whether we are left with positive or negative memories.

So, we may not be able to choose our birth family, but we do have control about the selection of friends. Many of us living with chronic conditions find that friends may change. Sometimes it is due to others not believing us, judging us, being too busy to accommodate our changes to be around us, or just plain uncomfortable being around the changes we must face. We aren’t the same person we use to first be, for a chronic medical issue can make you tired, not able to do things you use to do with those friends, and as you all know, living with pain, life can be a struggle. Some find it too sad or too much extra emotional work to be with us. At some point, we need to let them go and fill our lives and hearts with others who provide a healthy substitute kinship now that your life has changed so much.

We have a family by choice and so enjoy their love, support and being part of their lives. So many of our days involve taking care of a medical condition which can lead to taking us on alternative paths from so many leading more conventional lives.

Examples of my chosen extended families include:

  • Our consistent visits to the pool, seeing the same group of people that we adore, means the world to us. If someone doesn’t show for a few days, people check in with them to make sure they are ok and even help with cards and food, if needed.
  • And then there are my appointments to physical therapy anywhere from three to five days a week. We always look forward to going there and catching up with the staff along with other patients we have gotten to know through the years. Along with enjoying the developed friendships, we find comfort, help with pain and learning how to help live life with medical issues.
  • Sundays we attend a Unitarian Chapel and are surrounded by those we love and respect. We share common values and are always taking time to listen to each other, care and help in any way we can. And it was at one of our services our minister brought up this title of Family by Choice that just caught my attention to want to write about it.
  • Neighbors mean so much to us, too. We just moved four miles away from a farm we had raised our four sons on. Along with loving the property and way of life, we developed some amazing relationships that are special to us and will remain, despite our location change.
  • Food shopping at the same location in time has provided us with support and the caring of others through the years. We always come home feeling recognized, cared about and enjoy sharing life with those we have become close to.

These are a few examples of important people in our lives. We each must turn in various directions to find support, friendship, and love. Sometimes one is lucky to include their family in this list while others only have their chosen family through other experiences and pathways of the life they are living. What is your story? May it be filled with true friends that are there for you, and you there for them.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Peter Stanford

I’d like to add a coping skill I’ve learned for dealing with chronic pain. Humor! I have become an addict of old Carol Burnett videos, especially those with Tim Conway and Harvey Korman. I also watch Honeymooners videos. All available on YouTube. Laughing at these ‘fire up’ the endorphins in the brain which don’t help a lot but why not employ them? People also don’t know how to act around someone who complains about pain all the time. However, they may just look forward to being around someone who smiles, jokes and laughs at times. I’m concerned for Rosalind Rivera. She needs people to talk with. I wish I could talk with her. In 2009 I founded a charity, 501(c)(3), to help families of chronic pain patients live with and communicate with their family member with chronic pain (or a friend) but hackers destroyed our website and YouTube site which had over 300 videos donated to us by a doctor! Having done that (it was very difficult) helped me deal with my chronic pain, and taught me a great deal about inner strength. Pray for Rosalind, she’s crying out for help!

Peter Stanford

Thank you for your story Ellen Lenox Smith, it couldn’t be more important that you showed how you cope in order to survive chronic pain with a positive outlook. I have suffered chronic pain since the late nineteen eighties. I suffered terribly from an intense pain in my lower lumbar region. I went to a local hospital’s head of Orthopedic Surgery for two years and not a single test could help to diagnose it. He asked if I would mind going to a pain clinic. Of course I immediately agreed and was lucky enough to be introduced to an anesthesiologist who was also an orthopedic expert. I was sitting, when she asked me about symptoms. They were simple, standing up caused pain that almost caused unconsciousness. Walking was virtually impossible so basically I had to be helped everywhere and to do most everything. She asked me to stand, watching me closely, and she immediately diagnosed coccydinia! What? I went through 12 years of meds and injections without much more than an ability to slightly tolerate the pain. I then, one evening, went to hospital to visit my wife who had a minor fusion
done. I ran into her neurosurgeon whom she had told about me. He said I needed a ‘pump.’ Within 2 years I had a different pain doctor and a “directed medicine pump” implanted in me. The pain was completely gone, but, you’ve got to accept that along with the obvious benefits of a pump, comes the negative possibility that it could fail, overdose you and kill you. In the meantime I had developed other pains, explained to me as probably there before but disguised by the intense pain from the coccydinia. MRI’s showed the causes to be scoliosis, kyphosis, degenerative disk disease, spinal stenosis, and a T10 fracture. My present pain physician from a different pain clinic is keeping the pains mostly in check. It is unbelievably unfair what our government is doing against opioids. Mine have been cut by more than half. Injections have been increased and I’ve learned to live with the pain.

Notasheep

Roselind, tears are rolling down my face. Your story is one most of us can relate to. My dogs are my daily comfort. They are never to busy for me and I know yours are the same. Friends have fallen to the wayside of life, I miss them. I do have family a short drive away, but only see them rarely. Reading and connecting online IS my lifeline. There is not one person here who doesn’t wish they couldn’t grab you up and hug the stuffing out of ya. We all know just how lonely chronic pain makes you.

Consider yourself hugged…….

Rosalind Rivera

I’ve had all the pain that I can take and just want to go home with my Lord.

Rosalind Rivera

This article saddens me as before my pain medications were cut back in terms of quantities and dosages, I did have a few family members that tolerated me due to my chronic and intractable pain.
Now, I have no one. I no longer have any support from anyone of any kind except for my pain management doctor who has very reluctantly cut back on my pain medications. I reside in California and relocated here from New York about 7 years ago. At that time, I came here as my youngest son pleaded with me to come to California because it would be so much better for my health.
Last month, my son and his family moved back to the east coast and I was left alone. I always feel as if I were left behind and abandoned. He had finally had enough of my complaints about my pain and how I could not leave my home or do anything that I had previously been able to do.
I live in a desolate area by the Mojave desert and know not one soul that I can talk to. My only companions are my 4 dogs. This is now and for a while before, my existence, not my living. Not anymore.

Dar

I agree that communication and support are so important, however getting away from the frustration, and endless pushing, and trying to get to the point of that stage just has not happened for me. The pain will not ease up enough for me to live the way I want to live, the way I was almost living, at least, closest to acceptable, for a happy and somewhat ‘normal’ life. I admit I started getting hopeful after reading the progress of the pain community, and all that started looking up when the truth about opioids started surfacing.I believed pain patients would begin getting the treatments needed, and deserved. I have not made much progress, and the tiny dose of 15mg Hydrocodone is just not helping me. I have 200+ pgs.of previous medical records proving several diagnoses from Lupus to Lyme disease, Rheumatoid arthritis, neuropathies throughout my body, herniated, bulging discs, fractures in my spine, and more. Itjustdoes not seem to matter enough. I became disabled when I wasinmy 20’s, and I am now 56. Is there anybody out there who can tell me, and others, how to find a way to prove everything? Doctors do not have the time, or energy, to follow every lead. I recently had a pain management Dr. tell me I was lucky I found a Dr. who will prescribe any pain med. at all. The news just broadcasted a local city is suing a local pharmecutical co.for making opioids, and promoting medications that caused addiction, and finally heroin, and fentanyl addiction. The commercial made it seem like it has all been caused by pain medications, Dr.’s prescribing them, again. I realize, I say, through my tears and pain, things did start to look better for Dr.’s, and pain patients, but this is absolutely torture. Are cities suing over addictions to alcohol, nicotene,even addiction? No. I guess this torture of the war on pain patients continues, and with sad, and deadly consequences. Is there even one person who could stand-up for us, and help us now?

Thank you Ellen. I understand this post very well! I’ve had to create my own ‘family of friends’ outside of my own ‘family’ numerous times over the years of my illnesses. Empathy goes a long way for us, wherever we may find it.

Thomas Wayne Kidd

Your little story touched me. I thank you for your love towards others. My good friend and landlord just passed a couple of weeks ago and his wife promised us that we could stay on in the house we have known as home for the past 24 years, but after promising us three or more times nothing would change she changed her mind. What she actually did was lie to us. I have no animosity towards her but it still hurts just the same. She knew about my wife and my chronic pain problem but I guess money is much more important to her. I will as in my other trials trust my Redeemer and take it one day at a time. In our present condition we will need much help in moving when the time comes. I will endure and look up as I go, knowing that much more terrible things are coming. Perhaps I will be with my Lord Jesus when those things come. I continue on with peace and contentment and in His perfect love which casteth out fear. God bless all who will put their trust in Him, because mankind cannot be trusted just so far.