TW: Anxiety, depression, medical trauma, suicidal ideation, intrusive thoughts, flashbacks, ableism, discrimination.

Today’s post is the first installment of Ally’s Toolkit – Delicate Little Petal’s new initiative to help prospective allies become more involved in supporting the chronic illness and disability community. With more and more advocates experiencing burnout, the importance of creating create clear, actionable steps for allies is becoming increasingly clear. For this to be successful and practical, I need YOU to help me learn more about what other chronically ill and disabled people need from their allies. I also want to hear what kind of information and which formats allies find to be the most useful, so please share your thoughts in the comments below or via email to jess@delicatelittlepetal.com.

What is PTSD? (and what is it NOT?)

One of the most important things about being a good ally is having a clear understanding of the issue at hand actually is. This may seem obvious, but unfortunately physical and mental illnesses are often accompanied by misconceptions and outdated information. PTSD has been dealt a particularly bad hand in this regard, as it is often portrayed erroneously (or very 2 dimensionally in the media), so let’s start with a clear definition of what this condition actually is.

PTSD stands for Post-Traumatic Stress Disorder. Trauma occurs when we experience an event or events that cause us significant distress or threaten our physical or emotional safety. Traumatic events do not always cause symptoms, and experiencing symptoms after a traumatic event is not always an indicator of PTSD. Symptoms such as anxiety, depression, nightmares, and struggling to cope with situations that trigger memories of a traumatic event are (to a certain extent) to be expected if we have been through something that has had a big impact on us.

While these symptoms can still be very distressing and are absolutely deserving of treatment and support, it is important to distinguish these “normal” after-effects from the “disorder” of PTSD.

The label of PTSD is usually applied when symptoms are severe, carry on beyond a “reasonable” timeframe, and prevent a person from living a normal and fulfilling life. PTSD symptoms can vary significantly from person to person but may include flashbacks, intrusive thoughts, self-destructive behavior, overwhelming shame or anger, emotional “numbness,” feelings of detachment, difficulty maintaining relationships, and suicidal ideation. Mayim Bialik explains these distinctions further in the “Overcome Trauma” episode of her podcast “Mayim Bialik’s Breakdown.”

So, how can I be an ally to the PTSD community?

1. If you take nothing else from this post – stop using the term PTSD to refer to minor inconveniences or everyday stressors. This devalues the experience of this extremely debilitating and often treatment-resistant condition. Similarly, be mindful of downplaying the experiences of others. A variety of factors contribute to the development of PTSD, including genetics, previous experiences, and the level of support received directly after the event. Just because you do not feel that you would be affected by a certain event, does not mean that it hasn’t inflicted significant trauma on someone else.
2. Listen and learn about the different causes and presentations of PTSD. Every case is different, so do not assume that someone’s experience will conform to your expectations or to the portrayals you have seen in the media. The only way to understand someone’s needs is to listen to them directly.
3. Be aware of the systemic issues that may put certain groups at greater risk of PTSD, including people of marginalized sexual or gender identities and racial groups that are at risk of experiencing violence and discrimination. Another example of this is people with chronic illnesses and disabilities whose autonomy and safety may be regularly threatened by the flaws in the modern medical system. Center the experiences of these groups and call out those who seek to downplay these factors.
4. Stay informed about the political parties in your area that prioritise mental health research, and support services for people with PTSD. It’s also a good idea to think about which political candidates and/or governing officials care about tackling the systemic issues that contribute to the development of PTSD in marginalised groups. Voting, letter writing, and participating in petitions is a powerful way to re-inforce these values in those that already have them, or exert pressure on those who are neglecting these issues. This idea can also be extended to grass-roots organisations which may give you the opportunity to contribute time, money or simply your voice to the issues you care about.

How can I directly help someone in my life who has PTSD?

1. Be patient. Progress with PTSD can be painfully slow, and some patients are never able to make a full recovery. Pressuring someone to confront triggering situations before they are ready or talk about their trauma when it does not feel emotionally safe for them to do so can actually worsen PTSD symptoms long-term. Leave it to the professionals and respect that the patient knows their needs better than you do!
2. Validate feelings. PTSD can give patients a warped sense of reality. Reinforce the idea that what your loved one went through and is currently going through is serious and that their symptoms are the result of a medical condition, not a reflection on them as a person. Give them space to speak up about any frustrations, such as the limitations of treatment.
3. Offer practical support. Depending on the circumstances surrounding your loved one’s PTSD, accessing treatment may be very difficult. If you are able to, you can offer assistance with researching treatment options and setting up appointments. There may also be times when the person is unfortunately unable to avoid triggering situations, such as needing to go to a doctor’s appointment (when PTSD is the result of medical trauma). Offering to go through these situations with the person can be a significant source of relief.
4. Spend quality time together. Sadly, it is not uncommon for PTSD to make it incredibly difficult for people to do things they once enjoyed. Offer to meet the person where they are at by spending time together in a way that is sustainable for them, or ask them what you can do to make the things they enjoy more accessible to them at this difficult time.

In summary

I hope that this blog post has provided valuable insights on how to be a good ally to people living with PTSD. It is important to understand that PTSD is a serious medical condition that requires patience, empathy, and support from those around the affected person. By being mindful of our language, listening to the experiences of those living with PTSD, and offering practical support, we can make a positive impact on their journey towards healing and recovery. Remember that every case of PTSD is unique, and the only way to truly understand someone’s needs is to listen to them directly. I hope that the suggestions in this post you can deepen your understanding of PTSD and how to be a supportive ally. Let’s work together to break the stigma around PTSD and create a world where people living with PTSD feel seen, heard, and supported.

What would you add to this list?

Let me know in the comments below so we can work together to build an amazing toolkit for allies of the chronic illness and disability community!

Resources for further reading

National Center for PTSD – Comprehensive information about PTSD with a particular focus on supporting US Veterans

Phoenix Australia – Provides online trainings and information about trauma informed mental health care

Help Guide – Some great advice about supporting close loved one’s with PTSD

Health News – Useful information on how to support someone through encountering a trigger or flashback

Psychiatric Times – Information about the unfortunate reality of treatment-resistant PTSD

Bialik’s Breakdown – Mayim Bialik’s podcast episode about trauma and PTSD

NHS – An overview of PTSD and the factors that contribute to it’s development

Please see Veteran’s Affairs, Trauma Psych News, or the Multidisciplinary Association for Psychedelic Studies for discussion about the prevalence of PTSD and general health inequity among members of marginalised groups.