Seeking Personalized, Holistic Treatment for Ocular and Mental Health, Part II
with Anu Chiarelli, MA, RN
In Part I of this two-part blog post, Anu Chiarelli, a counselling therapist, registered nurse, and dry eye patient, discussed how dry eye disease (DED) can negatively impact mental health. For Part II Anu discusses the benefits effective, personalized, and holistic treatments can have on both physical and mental health.[Interview Continued]
How can finding effective treatment for DED have a positive impact on mental health?[Anu]: Effective treatment can get us back to functioning in life and enjoying life. That was my case. When I started getting effective treatment, I first got back into functioning in life better and then with more treatment I got back to enjoying life.
Having severe dry eye can be quite traumatizing, and the anxiety doesn’t completely go away because there is worry over whether the treatment will last. And if it doesn’t last, there is worry whether treatment will work next time.
I found the anxiety can be there even though my eyes can be ok. A little bit of dryness or anything I notice in my eyes can trigger that anxiety. Hypervigilance to anything that could be wrong is one of the symptoms of trauma. PTSD means that something traumatic happened in the past and you are reliving it in the present.
If you get effective treatment, then you can enjoy life in the present.
What is holistic treatment, and how can treatment be personalized for each patient?[Anu]: Holistic treatment is the whole person approach. It includes the physical, emotional, mental, spiritual, and relational or social aspects of a person. Holistic treatment recognizes that no part can be separated from the whole and all those parts impact each other because it is all one.
Personalized treatment really means that you consider all the different aspects of a person. No one can be an expert on all those different parts, but doctors and ECPs needs to recognize the impact of all those different parts and educate their patients about that because a lot of patients don’t understand the body-mind connection. If your patient has mental health issues (which has such a stigma associated with it), so another term is stressors, or life issues, help your patient get help.
I’ll use myself as an example for personalized treatment. I needed IPL with gland expression to get the glands unclogged, and it helped my rosacea, but I still had dry eye because of my aqueous deficiency, so I had to treat that too. Diet and supplements helped with that. Mental health was a big factor. I recognized there were some very specific stressors affecting my eyes, and it is about identifying one’s own specific stressors. Also look at your environment. For me, dry environment is great, I feel good. Why, because I’m in my happy place. For somebody else, that will be a horrible place to be because they need lots of humidity in their environment. Physical activity made a huge difference for me. Hydration, drinking lots of fluids, for me made no difference. Eye drops are something that some people like a certain brand while others can’t stand it. So that is personalizing it, when you consider what is best for each patient.
I don’t think it should be left to the patient to discover this. How would a patient even know? How would a patient know that mental health affects eyes? How would a patient know that the food that they eat affects their eyes? How would they know which foods are inflammatory or anti-inflammatory? That’s why ECPs, the ones that treat dry eye, need to be educated on all these different factors so they can talk to their patients about it. I’m not expecting all ECPs to be fully educated in diet or mental health, etc., they’re not counsellors or dietitians but they need to have enough knowledge to talk to their patients about it and refer to those who can help them further.
I think it is important for ECPs to ask the question “how is dry eye affecting you emotionally, what is the impact on your life?” Educate people that mental health and emotional wellness makes a difference on how your eyes feel. People need to understand there is a connection here so they can seek treatment.
Do you believe holistic and personalized treatments will improve treatment compliance for DED treatment?[Anu]: Of course it will because it is what the patient needs. If the treatment plan is done in collaboration with the patient and it is personalized, the patient feels like this is the right plan for them, they’re agreeing to it, it makes sense, and the doctor understands what they need.
The doctor needs to understand what the patient needs and what the patient is capable of doing. If the doctor says “this is what you need and it is really good for you,” but the patient thinks, “I don’t like that” and “this isn’t going to work for me,” or, “I’m not able to do that,” the patient won’t follow it.
How do you advise patients to advocate for themselves to get the care they need?[Anu]: Patients should not have to advocate for themselves, that’s my first thought. I deal with a lot of people who are tired of advocating for themselves. It’s doctors and other healthcare providers that should be advocating for their patients. As a nurse that is what I was taught, to be an advocate for my patients. I’m the one who knows the health care systems, I have knowledge about health, I need to advocate. When people are sick, they are vulnerable, they don’t have the energy, why do they have to advocate for themselves? Shouldn’t they be taken care of?
That’s why I say all ECPs should be advocating for the patients to get the proper treatment for dry eye, and if the ECP is not specializing in it, they should be sending their patients to those who do treat dry eye. Then, the dry eye specialist should be advocating by saying, “what is it you need?” and, “I’m going to help you find what you need.”
As a dry eye patient, I have felt the need to advocate for myself. When somebody asks me “what do I do, I have dry eye symptoms?” I say, “find an eye doctor who has multiple treatment modalities for dry eye because if they have multiple modalities for treatment then you know they are invested in it.” That shows they’ve made a financial investment in getting the equipment, so they probably have knowledge. That is your best bet, is seeking out a doctor like that.
You have also discussed the importance of trauma-informed care. Can you explain what that means as well as why it is important for all ECPs and staff to be informed about this type of care?[Anu]: Trauma-informed care is important because over 70% of Canadian adults report some kind of trauma, [i] and trauma has a lasting impact, no matter when it happened. Because trauma contributes to mental and physical health issues, we know that from studies, that is why all health care providers have to be informed because it affects health. We also don’t want to retraumatize people and we want to support their healing from past trauma.
Trauma happens when someone uses their power and control, and you are harmed in some way. Then, you have the memory of that trauma in your body and that can be triggered when you are in a situation that reminds you of that past trauma.
For example, my last eye appointment, I had an Optomap done, and the tech says I have to hold your eye open, and she went to do it. I immediately felt in my body my heart rate going up, that I’m tense, that I’m ready to fight, I felt the adrenaline, and that this is not safe. But I’m like, she’s got to do this, this is her job. I’ve agreed to this and I’m trying to stay calm, but my body is saying no, this is not ok. I held it in, and I held it in, then I said “no, you can’t do that.”
Why did that happen? For me, holding my eye open reminded me of torture because I had to keep my eyes closed so much before effective treatment. If someone forces my eye open and I can’t blink, I think that damages my eye and that causes me incredible pain. It was a flashback to the past. Some other people go to a flight response and someone might even harm the tech. Healthcare providers need to understand that when they go to do something to a patient that can remind the patient of the original trauma. They need to ask permission.
It is also important to recognize that a lot of patients with trauma don’t have a voice, so it is important to watch their reactions, help them through whatever you are doing with them and help them have choice.
What do you suggest patients look for in an ECP?[Anu]: If they have the equipment to diagnose. Also, if they have multiple ways of treating. Other than that, you can look at websites. It’s becoming better in Canada in that doctors have websites, so looking through their website and seeing if their clinic could be a good fit. But you won’t know much until you actually go in to see what the doctor and staff are like. It’s also important to recognize that if I go into a doctor’s office and it doesn’t feel right for me, go somewhere else. That’s the nice thing is now we have more choice. In my city there are several people I can choose from now, so I don’t have to be stuck in a doctor’s office where I don’t feel respected or understood or I’m treated like cattle.
I need to have a place where I’m respected, I’m understood, where I feel like they care about me, where there is trauma-informed care, and where they are competent.
What steps can patients take to keep themselves informed on current DED guidelines and recommendations?[Anu]: There are reports like DEWS II, but things become outdated quite quickly, and a lot of that information isn’t for your average patient because it is medical.
More research needs to be done so that we can have guidelines and we know what the best treatment is. It gets complicated of course because everyone is different, but still, we need more research. Where are the guidelines? We need to develop the guidelines first.
Find a doctor that stays current. It’s the doctor’s responsibility to provide you with the research. That’s why I like both of my dry eye specialists because I say, “what is the research on this, give me the evidence,” and they can talk to me about it. Doctors are supposed to stay current. If I have a dry eye specialist who quotes something from 5 years ago, I say “that’s not good enough, have you read the latest articles and can you share them with me.”
Would you go to other blogs or websites to see what treatments are current?[Anu]: That is becoming better now too. The problem is knowing who to believe. If you go on a dry eye specialist website, or somebody like I-MED Pharma where DED is what you do, so when you find a reputable website then absolutely that is a good place to get information. I also think that those websites should have links to the actual research. If you say something back it up so that we can go and look at it.
Bottom line is you have to advocate for yourself. If you go to an eye doctor and you’re not getting better, then you need to find another one. And this is also where I believe those online patient support groups are good because you get information from other patients and so you can look into things that you didn’t know existed.
Are there any dangers associated with online patient support groups?
My experience with patient support groups was that I was kind of the success story in that group. I found that a lot of people said, “if you can be successful with that treatment then maybe I can be too.” Then people would ask me, “how did you get better?” and I would point them in the right direction.
The problem is that there are all kinds of crazy ideas out there. Also, what works for one person doesn’t work for another, so there is a lot of money wasted and a lot of discouragement. And many do not realize that holistic treatment is needed. So, there is absolutely a danger in that you follow all kinds of advice sometimes. The crazy ideas are usually out of desperation.[End of Interview]
Education is an essential part in finding effective treatment for DED. I-MED Pharma would like to thank Anu Chiarelli for sharing her considerable clinical knowledge along with her personal experiences as a DED patient to help explain the complex link between mental health and DED.
[i] Van Ameringen, Michael, Catherine Mancini, Beth Patterson, and Michael H Boyle. 2008. “Post-traumatic stress disorder in Canada.” CNS Neuroscience & Therapeutics 14(3): 171-181. https://doi.org/10.1111/j.1755-5949.2008.00049.x.