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Growing From the Pain: Lessons on Post-Traumatic Growth
Today I want to share about a topic that isn’t discussed nearly as much as it’s negative counterpart. I want to talk about Post-Traumatic Growth.
Post-Traumatic Growth is a mental reaction, not discounting the trauma one may encounter, but occur alongside the negative biological reactions to trauma.
The best way that I can explain post traumatic growth, and growing not despite, but because of trauma, are the lessons from Dr. Al Freedman. Dr. Freedman is a friend of the Association and a psychologist who has spoken at several events for us. The lessons listed here are from a presentation he gives called “Lessons Learned.” Many of the examples given for each lesson below are related to histio. In his original presentation, Dr. Freedman speaks about his late son, Jack, who lived until 26, despite only being given a prognosis of living until age 1.
Lesson #1: A rare disease diagnosis IS a trauma
In the case of children with histiocytosis, following children’s lead can be very helpful. They may not know as much as a person yet, but they know their own bodies.
This, of course, applies to adults as well. Even though they are adults, there is still a stigma of unbelief that happens, where they still need to convince doctors that the pain they are feeling is real. It may not be a struggle for many with histio on their skin, but it can be for those with bone involvement.
Belief in their pain can help mitigate any trauma they experience.
Lesson #2: It is hard to live with uncertainty
Uncertainty for how long we or loved ones will live, if it’s more severe. Uncertainty about how difficult their lives will now be. Uncertainty in the treatment, especially the new ones.
Lesson #3: Hope breeds hope
It’s important for us, as a rare community, to surround ourselves with hopeful people.
I have been blessed to have a team cultivated by hope. Whether that’s the hope for their spouse or child’s histio battles, other rare diseases, or the hope that they can have a greater impact in their work.
Lesson #4: Family matters
Some of the strongest patients I have seen, have family that is bonded over their treatment and recovery. Even those with smaller, or more extended families, thrive because of their families’ support.
Lesson #5: Community strengths and supports
Whether neighborhood communities, school communities ,work communities, faith communities, or rare disease communities.
As members of a club we didn’t choose to join, it is important to gain strength from other people.
Opportunities to be together give us connection, hope and strength as we guide each other and provide each other through the experiences we have.
Lesson #6: Friends make a huge difference
In terms of mental and emotional health, we all need our friends, whether we have a rare disease or not.
“Who can I count on when the chips are down?”
Lesson #7: Doctors and Nurses are people too
It’s important to remember that we’re experts in our rare disease, but we’re not doctors.
We need to work with them respect what they know and be on the journey together.
Lesson #8: Scientific Progress brings new hope and new challenges
Scientific Progress is a great problem to have, but it does open up the door to other challenges.
With new treatments come new side effects, new protocols and new insurance obstacles. These are all things patients need to overcome, even when they are getting the best treatments.
Lesson #9: Emotional Health is important too
While caring for yourself or a loved one’s physical condition, you should still address their emotional health once, or as, those physical aspects have been addressed.
Whether it be through your local community, or support groups for people with histio, addressing it is necessary, and can be therapeutic.
Lesson #10: Anything is possible
People may feel, reasonably, limited by their disease, but anything is possible. Some diagnoses give poor outlooks, but people’s bodies or new treatments can overcome those initial outlooks. I personally know many histio patients that were told they’d never be able to play sports, ride horses, or achieve certain goals. Many feared that they would not be able to continue on with their education or a career unless they were able to get the proper treatment. Through raising awareness and providing education to families and healthcare professionals, the diagnostic odyssey continues to shorten and through meaningful discoveries related to the diseases, genetics, and treatments, more individuals can find themselves histio-free.
The progress being made shows us that anything is possible. All the patients who push through the ‘you’ll never be able to’ and continue to reach new heights – defy the naysayers and do incredible things. This journey is tough, and we must advocate for ourselves and our loved ones, but anything is possible!
Lesson #11: A child with a rare disease also has many rare gifts.
In his lessons, Dr. Freedman is talking about his son, but this applies to any rare disease patient, adult or child.
Histiocytosis patients are resilient;, they deal with not only fighting the battle of the disease, but navigating the rare landscape, where fewer doctors know of the disease, and even less know how to properly treat it. They need to advocate for themselves every day.
Amongst those battles, they need to cope. Many histio patients cope with music, art, sport (when they are physically able to), and a wide array of leadership roles in their life. They become skillful in those, and that is part of their growth, because of their trauma.
Not only do they work their way to recovery, but they pioneer new paths for those who come after them. Many histio patients fight the battles now, and it leaves less battles to fight for future generations. Many people impacted by a rare disease, in our case histiocytic disorders, seek to give back and find meaning when the time feels right. The Histiocytosis Association’s Ambassador Program has over 25 Histio Ambassador volunteers who are eager to support anyone in need, especially those with a new diagnosis or those still searching for answers.
What they, and I, find is that they have more information to give those patients than when they were given when going through the brunt of it. Progress is happening, step by step, and its in those moments of stewarding future generations of patients through it, that we can discover the progress we have made over the years.
Still Growing
When I was a child, and my parents called Jeff Toughill at the Association, there was so much being done by the Toughill family and their volunteers even without the scope of technology we have today. Now, through the efforts and hard work of those who passionately supported the Association since 1986, we have the privilege to lead an Association that has a global reach. One that stands on the shoulders of that platform Jeff & Sally built because of their own daughter’s LCH diagnosis, that grew out of the questions they had. Today, we get to share more answers to questions because of the Toughill’s journey and the work they did to fight through the rare disease landscape back then.
Our patients attract compassion, and because of that, we can spread it as well. I wouldn’t be where I am without the compassion of the Association, the community I found within those impacted by histiocytosis, and of the providers who were willing to help my family through this. Whatever that avenue is for you, where you attract compassion, and get to share it with others, I hope you know it is a great blessing in your journey. The growth we gather from all the compassion is that we get to give it back.
Dr. Freedman felt he was a better father and therapist because of his son. I know, as well, that I am a better leader, because of all the courageous histio patients that have touched my life these past 25 years, as I’ve been a part of this community.
Secondary source: Post Traumatic Growth (PTG) in the Frame of Traumatic Experiences – PMC