Recovering from an invisible illness: a double challenge
Having an “invisible” illness presents a double challenge: the physical process of being sick and the social process of gaining recognition. And when improvement occurs, it turns out that the to heal more complex than I thought.
In our society, there's a wide gap between illnesses that are widely recognized and understood – think of cancer or diabetes – and conditions that are “invisible,” such as long-term Lyme disease, chronic fatigue syndrome (ME/CFS or other images with vague complaints.
“I not only had to get better, but also prove that I had really been sick.” – Ms. M., 34 years old, recovering from chronic Lyme
Recovery without social support
For many chronic, difficult-to-measure conditions with often vague complaints there is no clear treatment path or unambiguous diagnostics. Patients say their symptoms are minimized or that they don't feel believed.Baarsma et al., 2022).
This has consequences for healing:
- You must find suitable care and assistance yourself.
- This route is usually poorly or not at all reimbursed by health insurance companies (which is the case with recognized complaints).
- You often miss the automatic support from your environment, employer, or institutions.
- You don't have a clear endpoint: “When am I better?” remains vague.
“When my energy returned, my employer's help stopped. But I still didn't feel like myself for a long time.” - Mrs. A., 41 years old, recovering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Fragile transition
When you're doing better, the outside world often expects you to be “your old self” again. But recovery from a chronic and “invisible” illness is rarely linear. Energy fluctuates, symptoms can temporarily worsen or return. The body not only heals the causes of the illness but also needs to repair the damage sustained by various organs and tissues. And we often see in our practice that when the main cause of a chronic illness is almost eliminated, other pathogens suddenly become more prominent. This is often the case, for example, with Lyme disease and its co-infections.
For people with ME/CFS or chronic Lyme disease, energy management is also essential: gradually build up activities to prevent relapse. NICE guideline ME/CFS 2021The body needs that extra energy for the recovery and healing process. This is why healing is often very tedious. You feel yourself coming back to life instead of just surviving. After a long time, you want to do all sorts of fun things again. And you are capable of doing more too. But you are not completely recovered yet. To prevent relapses after various activities, it is necessary to continue taking it easy for a while and to plan and select your activities carefully. Healing therefore requires a certain discipline. The better you manage this, the more successful your healing process will be.
Psychological and social processes
Healing means more than just physically recovering. Because you literally gain more energy, old emotions suppressed by the illness can surface. Fear of relapse or feelings of disbelief from doctors or loved ones can also strongly emerge during recovery. Research shows that experiencing a lack of understanding and disbelief from the outside world in ME/CFS is associated with poorer social functioning and more psychological suffering.Froehlich et al., 2022).
“I noticed that my friends were happy that I was joining them again, but they didn't understand that I was exhausted after just one afternoon.” L., 29 years old, recovering from post-infectious fatigue
What helps in this phase
Here are some points we provide to our clients:
- Listen to your body – don't force it, but allow for rest and recovery.
- Build up slowly New energy can tempt you to overdo it.
- Research patterns – what has the illness taught you, what do you want to take with you into your new phase?
- Create a network – continue to seek support from professionals and loved ones, even when you are doing better.
Healing as transformation
Healing doesn't mean returning to how things were, but building a new balance. It requires time, self-compassion, and conscious choices to make this transition. Those who navigate this process with care and attention lay a foundation for sustainable health – both physical and mental.Anderson et al., 2006)
At Ars Biomedica, we see guiding clients on this journey as an essential part of our profession. We provide space, knowledge, and support so that clients can not only recover but also grow into a life where health is an integrated part of their daily existence.
“I have learned that I am not going back to my old life, but building a new life with different boundaries and values.” – S., 37 years old, recovering from ME/CFS
Moving forward together
At Ars Biomedica, we don't just guide clients in healing ailments, but in recovery process – physically, emotionally, and socially.
Would you like to know how we can support you on your journey to sustainable health? Feel free to contact us for a no-obligation consultation. (phone 0343-537194 or info@arsbiomedica.com)
Sources
- “Knowing the entire story – patient experiences with chronic Lyme-associated symptoms.” BMC Primary Care (2022).
- NICE. “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.” NG206 (2021).
- Froehlich, L. et al. “Causal attributions and perceived stigma for ME/CFS.” J Health Psychol (2022).
- Anderson V.R., Jason L.A., Hlavaty L.E. “A cross-sectional investigation of acceptance in chronic fatigue syndrome.” Journal of Clinical Psychology in Medical Settings (2006).