Wondering ‘why me?’

Wondering ‘why me?’

We can all find ourselves in situations where we think ‘why me?’. It is a normal response to any difficult or distressing situation, especially when it is related to something outside of your control. In fact, research shows it is a part of the natural response cycle that people go through when reacting to shocking or upsetting events.¹

Although it is a normal question to ask ourselves, people with chronic spontaneous urticaria (CSU) may find themselves asking ‘why me?’ more than most.

Living with CSU can be an unpredictable journey and sometimes you just need to vent your feelings. It can help get the frustrations out of your system for a while. But always remember that there are other people living with this condition and you are not alone. Discussing the emotional impact of CSU with others who are going through a similar situation can be very helpful.

Nevertheless, with its unpredictability and no clear cause, perhaps it is no surprise that people with CSU ask themselves ‘why me?’. In this article we hope to try and clear some of the confusion surrounding CSU by discussing ‘why you?’. We may not have all the answers yet, but we can share what we do know and provide support and advice.

Who gets CSU?

CSU is a condition that many people are not aware of, though this is surprising if you know the number of people it affects. Up to 1% of people worldwide develop chronic urticaria at some point during their life and at least two out of three of them will have CSU.² It can affect anyone, but some people are more likely to develop it than others. For example, you are more likely to have CSU if you are a woman or if you are between the ages of 20 and 40 meaning that CSU predominantly affects people during some of their most important years when many people are starting families and careers.² Frustratingly, CSU has not been associated with anything that you can control such as your occupation or where you live.²

Why does it happen?

Although there is usually no identified external trigger that causes CSU to flare-up, we do know that in about 40-45% of people their flares are caused by autoimmunity, an immune response against our own cells and tissues.^2-4 Normally, your immune system is your body’s protector, fighting infections and disease; however, in autoimmunity, the immune system mistakenly attacks the body. With autoimmune CSU, the immune system attacks a type of cell called a mast cell. These cells live in our skin and when attacked they release a whole host of chemicals that cause inflammation and produce the hives that you see on the skin.⁴

For many people with CSU, however, there is no link to autoimmunity.⁴ While it may be possible to find some comfort in the fact that non-autoimmune CSU is often less severe than autoimmune CSU,⁴ the lack of any insight into its cause can be extremely upsetting.

With no apparent cause and no identifiable trigger, it is also not possible to clearly predict what will cause your CSU to flare up. This unpredictability can leave you feeling anxious, angry and frustrated, so what can we do to reduce these negative emotions?

A problem shared

Sharing experiences and information, voicing frustrations, as well as understanding how others cope, can help relieve some of the stress associated with CSU. In many countries there are CSU support networks that can help you get through the tough times. If there is no group in your area, why not start one? Bringing people together can be a great way to support and learn from each other and taking an active role in supporting other people with CSU can be a positive and rewarding experience. Alternatively, there are a number of groups and forums online where you can chat with people going through similar experiences. The Skin to live in CSU Facebook community is a good place to start.

No one can understand CSU better than someone affected by it. You can share your CSU stories, thoughts, and discover other peoples’ opinions, on our CSU Facebook community page.

International Urticaria Day

An Awareness day is a great way to raise the profile of a cause; they have successfully been used to help increase the public’s knowledge and understanding on a range of different issues. Did you know that the world’s first International Urticaria Day was held this year on 1^st October?

By reaching out to both the public and those with CSU, International Urticaria Day helped to increase the knowledge and awareness of what it is like to live with CSU and just how many people it affects. You can find out more about it at urticariaday.org or by catching up with #urticariaday2014 on Twitter.

Staying positive

As we mentioned, it is understandable to ask ‘why me?’ when you are living with CSU. But do not forget that you are not alone, to try and stay positive and reach out to others for support when you need it. Why not start by joining our Skin to live in CSU Facebook community where you can talk to other people living with CSU. If you find yourself struggling with the symptoms of your CSU, it is important to also speak to your doctor as they should be able to help.