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Healing the trauma of a life-changing PI diagnosis

March 22, 2023

Most people associate trauma with distressing events such as a natural disaster, the sudden loss of a loved one, or an instance of violence, but trauma can also result from chronic illness, including primary immunodeficiency (PI)—and that trauma has an impact on mental health.

“Typically, trauma is something that is happening outside of us, something that once the event is over, we can escape it, we can move forward, we can avoid it. Medical trauma is something that is happening within the body, that is not escapable,” said Dr. Sacha McBain, a clinical psychologist who is an assistant professor at the University of Arkansas for Medical Sciences (UAMS) and associate director of the UAMS Psychiatric Institute’s Center for Trauma Prevention, Recovery, and Innovation.

“Because the potential trauma cues and the threat to self are already contained within us, it can create this cycle of eliciting those reactions over and over again and maintain a level of distress.”

Chronic illness can create an adversarial relationship between the mind and the body. A person with a chronic illness like PI may be motivated to do certain activities but is hampered by fatigue and infection.

“Sometimes the perceived failure of the body or the betrayal of the body can leave people feeling trapped, helpless, and losing control of themselves. Layered on that is how we live in a social and built world that does not accommodate people with chronic illness or disability,” said McBain.

With the average time to diagnosis for PI being 9 to 15 years, some live with symptoms for decades before learning why they have constant respiratory, sinus, or gastrointestinal infections. Meanwhile, illness can interfere with important life goals such as performing well in school or advancing in a career.

“Many people experience internalized ableism, for example, ‘I’m hearing so many messages that I should be doing more. Why aren’t I doing more?’ You can start to believe these negative messages about yourself. As a result, people can experience a very conflictual relationship between their mind and body that can lead to depression and anxiety,” said McBain.

Feelings of invalidation, disempowerment, fear, and lack of control that can arise from a PI diagnosis create a stressful experience that can be overwhelming, said McBain.

“It’s very easy for life to become illness and for the spotlight to get really starkly focused on this one aspect of life and its multiple impacts,” said McBain.

Seek professional help

McBain encourages anyone living with PI to reach out to a mental health provider so they can receive an unbiased perspective on challenges they might face.

Dr. Sacha McBain

“There can be many benefits to having somebody outside of your family, your network, who can offer you an objective perspective and a different type of emotional support. You need your social support network and your caregivers, but your family members are also a part of your disease experience. They’re going to come with their own feelings and experiences of your illness and their own reactions to it. For some, this can lead to fear of being a burden and result in not talking about emotions at all. Therapy can offer a space that is just yours to explore your thoughts and feelings around a life-changing diagnosis,” said McBain.

If classic signs of depression like low mood, fatigue, and changes in sleep patterns present themselves and significantly diminish the quality of life, then it’s imperative to find help. Health psychologists, or other trained mental health professionals, can help in showing a person how to live a value-based life within the context of their illness. Some primary care offices have mental health professionals co-located within the clinic to offer support. Your doctor can also help provide referrals to mental health professionals who have experience helping people navigate chronic illnesses.

“I think sometimes there can be this assumption of, ‘Well, this is just going to be what it is, and I’m just going to feel depressed, that’s just it,’ but that doesn’t have to be the case. Life will be different after a diagnosis, and there are strategies to help improve your quality of life when you’re ready,” said McBain.

“If people are struggling with making sense of a new diagnosis, are finding it difficult to manage their health, or are navigating losses associated with PI, they can reach out to a mental health professional and work together to process the grief associated with chronic illness and develop an approach to promote emotional wellbeing.”

Rely on your social network

If a person with PI doesn’t want to see a mental health professional but does want to take steps to ensure that they maintain a balance in life, they can make use of existing social networks.

“Positive social support is the number one protective factor against mental health concerns, and that’s why leveraging the support you have within your existing network is important. If that’s not available to you currently, it might mean reaching out for peer support and developing new social networks,” said McBain.

The Immune Deficiency Foundation offers several resources for support, including Get Connected Groups, Peer Mentors, Virtual Caretaker Support Group, and IDF Friends.

Another effective way to boost mood and increase energy is to engage in gentle exercise and other activities that give a sense of purpose and engagement outside of being sick. Remember to strike a balance between pushing yourself to get involved and offering yourself time for rest and self-compassion.

“For some people, it actually means giving ourselves more grace and understanding that fatigue is a characteristic of the illness and not a determination of your willpower and value as a person. Self-compassion in the context of illness can mean challenging the internalized beliefs that we have around illness like, ‘I’m lazy, I’m not good enough, I’m a burden to my family and society,’” said McBain.

Encourage loved ones to listen

Family and friends can support a person with PI by being available to talk, but also by being active listeners and refraining from offering comments that diminish the person’s feelings. Comments such as, “At least it’s not as bad as other illnesses,” “You just need to get over it,” or “Stop complaining and let’s go out and do something” only serve to constrain opportunities for emotional disclosure.

“How we combat that is to make space in our relationships to just listen. What tends to happen with people, and for caregivers too, is that there is this pressure to fix it. And you are not going to fix it, and when you try it often leads people to feel more unheard and invalidated, and that’s not really the thing that you are wanting in trying to fix it,” said McBain.

“We’re all seeking connection. So, when people are coming to us with their concerns or to process feelings related to their illness, first—believe them. Don’t try to fix it, you’re not going to say the right thing that will take away the feelings or the situation.”

If people do need help with problem-solving, ask them whether they want you simply to listen or if they want feedback too.

“Then respect the answer and do the thing that they prefer. We tend to jump to problem-solving and appeasing our own anxiety after hearing someone tell us something that is uncomfortable or distressing. We just want to say, ‘Well, have you tried this? Why don’t you do this?’ While it might help us feel we’ve done something as a listener, it actually suppresses disclosure and genuine connection,” said McBain.

While caregivers, friends, and family should strive to adapt to the emotional needs of a person with PI, the person with PI must also have realistic expectations of their relationships.

“We all have the hope that the people in our lives will just read our minds, pre-empt every need that we have. We tell ourselves that this is what a relationship should be like. Unfortunately, that’s a story we’ve been told about how relationships work. We have to be willing to acknowledge that although we may wish we didn’t have to express our needs, in order to help people help you, you also need to be actively expressing how people can support you. Give them a chance to help you versus assuming nobody wants to hear it, nobody cares,” said McBain.

McBain said that because very few mental health specialists are trained in both trauma and health, she recommends finding a provider who has expertise in helping people adjust to chronic illness.

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