Mental health awareness week

Hello, this post is a little later than I would have liked as mental health awareness week is coming to an end, but it has taken me a few days to reflect on what I wanted to post about.

To me, if you have a rare disease (like HSP) or a disability there seems to be quite a burden with potential to affect mental health. This post simply seeks to note down those areas.

Uncertainty

Simply, when you have a condition there are many more variables which can affect your future in ways that you cannot evaluate. Your future is less certain, and that uncertainty can be a burden, more so if you are the type of person who likes to plan their future in great detail.

Understanding

The burden of a condition or a disability is greater if you don't know about it. Understanding can be improved if you know:

* The name of your condition/disability and you have a firm diagnosis

* What symptoms might occur (and how they might affect you)

* What cures or treatments are available (noting, no cure for HSP at moment)

This area can be even more frustrating if the healthcare professionals you are seeking this information from do not understand what you have, or what you are seeking the answers for.

It is important to remember that you may be seeking answers that do not yet exist, and in that case the healthcare professional should be honest with you and say that there is no answer. They may be able to give you their opinion, or an approximate answer, or between you work out where to go looking to reduce this uncertainty. 

Support

The old saying 'a problem shared is a problem halved 'is true! Having a disability or condition can be a very lonely isolating experience, especially if you feel like you are the only person in the world going through your situation.

Being able to talk with someone you can trust can make a massive difference to your wellbeing.  If you are able to find a community of people who have the same or similar conditions can help you feel that you are not so unique, and you will know that there other people who are going through the same things that you are.

This kind of environment can also help on the understanding front, as within these communities there are people who are happy to share how they have overcome their own barriers, and their top tips for getting through life. You are often able to draw parallels between your situation and theirs and seek a path which you can either choose to follow or choose not to follow. These types of discussion can help reduce your uncertainty.

The communities can also be a place to share your frustrations and simply voicing these can help. Equally you may find benefit from listening to others share their frustrations. 

If you don't like the idea of finding a community of people with the same/similar conditions, and there is no-one in your close circle of friends or family that you feel you can talk with, then you could always reach out to more general mental health charities or groups. 

Change

We are all getting older, one day at a time, with our lives slowly changing as a result. If you have a progressive condition like HSP then your life may be changing at a different rate or in a different direction to the general path of change with age.

Having some awareness of potential changes can work either way. Those that like to plan well in advance may benefit from an understanding of how their future may be different from their present. Others may not like to consider how different their future may be. If you have HSP I think it is worth considering potential changes in the following areas:

* Mobility - your mobility is likely to change, and you may need to think about the use of mobility aids.

* Other symptoms - pain, fatigue and bladder problems (among others) can mean further changes on top of mobility changes - not everyone is affected by these (or other) symptoms.

* Travel - changes in your mobility may affect how you can travel, and if you enjoy travelling you may wish to think about how you may travel in the future

* Employment, hobbies and activities - any of those factors have potential to affect how you can do those things that are important to you. You may wish to think about how you can do things in a different way or from a different perspective to keep doing these important things.

* Your home - if your mobility changes a lot, you may need to think about changes to your home, to help you be able to move about your home and keep on with those day-to-day life essentials as independently as you can.

Grief

If you feel that you are missing out on futures which now seem to be difficult or impossible, then you may be grieving the loss of your future self. Grief is a natural process, but the process of grieving can be painful and take time. You may have to visit this process a number of times as your life changes.

Acceptance

If you do not feel that you have the condition that you have been diagnosed with, then you may not be accepting of your current situation. Accepting who you are and what you have can be a difficult process, but once you have accepted this you may be in a better position to consider what your future self may have to deal with. You may have to visit this process a number of times as your life changes.

Once you accept your own situation you can subsequently start to deal with accepting that others may see you as 'different'. If you have a condition like HSP and your mobility is greatly affected then people will always see your mobility aids because they are different from 'normal'. 

The acceptance part of using or changing mobility aids is twofold, firstly accepting that you are comfortable using a mobility aid (or a different mobility aid), and secondly accepting that other people will have an opinion about you, your condition and your new/different mobility aids. You cannot control what others think about you, their opinion is more about their upbringing than your situation. You are likely to be balancing the benefits of using the mobility aid against the mental 'cost' of being seen to be different.

Disclosure

Following from the process of accepting your own situation comes the next part of the journey, being able to share your story with other people.  

Some of the time it may not be important to disclose to other people that you have your condition, but in other cases it can be. The benefits of disclosure can be greater when you find day-to-day tasks more difficult, and in these situations disclosing your situation can help improve other peoples understanding of your situation. On the opposing side, once you have disclosed your situation it becomes more easy for you to be put in a different box than you were before, and that (or the potential of that) can be a hard thing to accept. In theory disclosure should open up avenues to support rather than block off progress to your future self, but I accept that it is not always as clear cut as this!

Depending on your situation you may feel the need to disclose your situation to your family or friends, to your doctor or other healthcare professionals, to your employer(s), to any insurance companies, to your driving licence authority, to your bank or mortgage provider (and so on).  

Summary

My journey in this area spends most of the time moving between the Understanding, Support and Change areas with the objective of reducing my own Uncertainty about the future. I don't often need to visit the Grief area, but I do spend some time in the Acceptance area. As my mobility is not affected significantly I have not had to deal much with the Disclosure area in official channels, but I feel that I will need to spend more time considering acceptance before I officially disclose more. 

In terms of this blog I will carry on sharing my story, in all its forms of disclosure! I will also carry on my annual surveys to share the wider picture of life with HSP, to help people with HSP form their own views about how their paths are different from/similar to others. It all helps me, and from some of the comments I receive I know it helps others too.